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									                 CALENDAR                                                                                                      PACE aims to Prevent Arrhythmic



                                                                                                                                                                           PACE PRESS
                                                                 IBANDLA LOKUTHWALISA ABAHLUSHWA NGOKUSHAYA                    Cardiac Events which can lead to
                                                                                 KWENHLIZIYO                                   sudden cardiac arrest by
                                                                              www.paceafrica.org.za                            advocating arrhythmia education,
                         2009
                                                                                                                               awareness, support and prevention
OCTOBER                                                                               INHLOSO YETHU                                                                                          Prevent Arrhythmic Cardiac Events
                                                              Ngokuthwalisa iziguli nangokukwazisa abantu nangoku cwaninga
22 SAHA Participation
                                                              izindaba ezintsha zokwazi, uPACE uzama ukuvimbisa ukufa oku-                                               Volume 2                                     Newsletter                                           October 2009
NOVEMBER                                                            bangwa ngokushaya kwenhliziyo ngendlela engafanele.           Hi Everyone,
14 Johannesburg Info/Support Meeting                        IZIMPAWU                                                              We are very happy to be distribut-     DISCOVERY OF ROGUE GENE
26 JHB PACE Presentation Prof AO                              -Ukuquleka okungavamile                                             ing PACE newsletter no 2!
                                                              -Izimbhakubhaku nenzululwane nephika                                                                       Research teams from the faculty of Health Sciences
28 Cape Town Info/Support Meeting                                                                                                 We have been expanding at a rapid      of the University of Stellenbosch, assisted by col-
                                                              -Isifuba esingezwakali kahle esibuhlungu noma isicindezelo uma      “PACE” which is sure to continue
28 Bloemfontein Info/Support Meeting                                                                                                                                     leagues from the Universities of Hamburg and Mun-
                                                               umzimba usetshenziswa                                              as a recent PACE and CASSA             ster have recently identified the rogue or defective
28 Pretoria Info/Support Meeting                              -ukuba nesiwombe sesifo esingachaziswanga                           (Cardiac Arrhythmia Society of SA)     gene that causes a type of hereditary heart disease.
DECEMBER                                                                                                                          meeting highlighted our valuable       The disease, known as Progressive Familial Heart           Proff Paul Brink, Eric Schulze-Bahr , Valerie Corfield, Olaf Pongs
                                                               Uma ubenesihlobo esishone:                                         synergy.                               Block (PFHB) type 1, affects the heart’s electrical                                and Andries Brink.
4 Durban Info/Support Meeting                                 -Emva kokujima noma ukwelula umzimba                                                                       system. Heart block causes palpitations, light-
                 2010                                         -Ngokuminza kanti ekwazi ukuhlamba kahle                            We have also acquired the strate-      headedness and fainting. PFHB can occur at any             into South Africa by a Portuguese immigrant at the
                                                                                                                                  gic planning and fundraising ser-      time in life. As the disease may progress to a com-        end of the 17th century. This man married a woman of
JANUARY                                                       -Engozini yemoto kanti ekwazi ukushayela kahle                      vices of MSM (Medical Society                                                                     Dutch descent and genetics has carried the rogue
                                                                                                                                                                         plete heart block, the successful management de-
17 PACE Half Ironman Fundraiser                               -Uma silele                                                         Management) which ensured fund-        pends on the timeous fitment of a pacemaker. The           gene down all the generations since then. Every
                                                              -Uma kushaye ucingo noma kukhale insimbi yokuvusa                   ing from MEDTRONIC Foundation          groundbreaking research, conducted over a period of        South African suffering from PFHB today is de-
JUNE                                                                                                                              International to continue our opera-                                                              scended from this couple.
                                                              -Ngendaba yephika noma isithuthwane                                                                        longer than 30 years, was initiated in the 70’s by Prof
7 World Heart Rhythm Week                                                                                                         tions. This was complemented by        Andries Brink, a Cardiac Specialist and former Dean        Following in his father’s footsteps, Prof Paul Brink,
                                                              -Ngendlela engamangalisi noma ngokuphathwa yinhliziyo emva          much appreciated individual and                                                                   assisted by Molecular Geneticist Prof Valerie
                                                                                                                                                                         of Stellenbosch University’s faculty of Health Ser-
11 Start World Soccer Cup                                      kwezimpawu zokuquleka ezingavamile                                 company contributions.                                                                            Corfield, began a study into the identification and
                                                                                                                                                                         vices. His son, Prof Paul Brink, Internist and Geneti-
                                                                                                                                                                         cist of the same University and Vice-President of          location of the defective gene that caused the condi-
                                                                                                                                  With Arrhythmia Support organiza-      PACE, continued his father’s quest for the isolation of    tion. They identified 71 carriers of the gene in three
                                                            A normal resting adult                                                tions being established worldwide,     the cause of PFHB.                                         families descending from the Portuguese immigrant
                                                             heart beats between                                                  even as far as Japan, South Africa     A breakthrough for South African medical science,          and his Dutch wife of whom 48 had pacemakers im-
                                                            60 and 100 times per         EMERGENCY THEATRE                        proudly was the 1st country to cre-    this discovery gives hope to sufferers, who can now        planted. Professors Brink (jnr) and Corfield’s exten-
                                                            minute with some ex-                                                  ate awareness in pharmacies dur-       get advance warning of their condition and seek the        sive research narrowed down the probable locus of
                                                             ceptions in a regular                                                ing World Heart Rhythm Week. We        necessary treatment. It will also assist academic and      the gene to an area encompassing about 80 genes
                                                                  synchronized                                                    distributed checklists and “pulse”     medical staff to gain a better understanding of other      on chromosome 19.
                                                           rhythm. An arrhythmia                                                  cards at 100 pharmacies! We also       conditions that affect the heart’s electrical system. By   At approximately the same time, Prof Olaf Pongs of
                                                            is an abnormal heart-                                                 established 7 support groups in SA.    administering a blood-based test, family members at        the Centre for Molecular Neurology of the University
                                                            beat which can be too                                                 These groups provide great oppor-      risk can be identified and treated.                        of Hamburg researched a link between gene TRPM4
                                                           fast, too slow or irregu-                                              tunities to gain information, share    In the 1970’s, Brink Snr treated an infant born with a     on the 19th chromosome and PFHB type 1. The sub-
                                                           lar, caused by the mal-                                                experiences and contribute ideas.      slow heart rate in Tygerberg Hospital. This child’s        jects of his study were all Afrikaans South Africans.
                                                               functioning of the                                                                                        only hope of survival was the implantation of an artifi-   He contacted the South African research team, stat-
                                                                heart’s electric-                                                 Prof AO’s Marathon des Sables          cial pacemaker. He soon became aware of another            ing his interest in a particular gene in their search
                                                             ity. Most arrhythmia                                                 race also raised R20 000 to start a    young child with a similar condition and when he           area and requested them to examine the specific
                                                            are nuisance rhythms                                                  PATIENT SUPPORT FUND! while            found out that the two children were closely related,      gene. The two research groups decided to join
                                                            but some could be life                                                Juliet Rogan our Durban Represen-      he realised that the condition could be genetic.           hands, which ultimately confirmed that the gene
                                                                   threatening.                                                   tative, hosted the PACE Comrades       Dr Marie Torrington, a Genealogy Specialist, uncov-        Pongs pointed out was indeed the one that, after
                                                                                                                                  Marathon refreshment station 38!       ered that this hereditary heart disease was brought        undergoing a very small change, causes PFHB.


                                                                                              CONTACT                             PACE enjoyed great media expo-         PACE POST
                                                                                                                                  sure locally and internationally and
                                                                                                                                  continues to create awareness at                                                                       2010 EXCO:
                                                                                                  PACE                            pharmacies and elsewhere.                                                                              President: Prof A Okreglicki, Vice-President
                                                                                            082 6999 699                                                                                                                                 Prof Paul Brink, CEO Lusan Luscombe,
                                                                                                                                  2010 promises to be an exciting                                                                        Juliet Rogan, Althea Goosen, William Stranix,
                                                                                                                                  year. We hope to initiate CPR/AED                                                                      Prof Manie de Klerk, Franciska du Toit,
                                                                                                 Box 22                                                                                                 Lilian Jacobs                    Sydney Jacobs and Prof Rob Scott-Millar.
                                                                                                                                  training in schools and create much
                                                                                                                                                                                                        Volunteer at UCT
                                                                                             Private Bag 11                       awareness during the soccer world                                     PACE exhibit
                                                                                                                                  cup!                                                                                                   New PACE Cell number: 082 6999 699
                                                                                             Mowbray 7705                                                                                                                                Annual Membership now available
                                                                                                                                  Finally, without very dedicated
                                                                                              Cape Town                           PACE volunteers, nothing would                                                                         First Zulu and Xhosa fact sheets!
                                                                                                                                  have been possible to date. We are                                                                     New Website design
                                                                                                                                  very grateful for their commitment.                                                                    Website administrator appointed
                                                                                         paceafrica@gmail.com                                                                                                                            PACE Banner distributed
                                                                                                                                  Thank you very, very much!                                           Lusan Luscombe
                           And where is this!?                                         www.paceafrica.org.za                      Lusan Luscombe PACE CEO                                                                                Exhibits at Cardiology meetings
                                                                                                                                                                                                       and Juliet Rogan
Clue: The lake at B___ on the N___ island of S___ emerged after a glacier melted.                                                                                                                      SAHA 2008
                                                                                                                                          P a g e   2
CASSA                                                                                                                                                    SUPPORT GROUPS                                                                                                                                        g e 7
                                                                                                                                                                                                                                                                                                          PPaag e 7


                                                                                         2009 was a busy year for CASSA and amongst its activities       PACE Support Groups currently run in seven cities throughout the country. Each group meet four times annually to pro-
                                                                                         were a national symposium on Syncope, a GP Roadshow             vide information and support to patients and their families.
                         A Special Interest Group of the South African Heart Association in the Western Cape, a slot on the program during the           “Living and understanding your device” was one of the interesting topics covered at support gatherings in Johannesburg
                                                                                         Medical Advisors Group Annual Conference and represen-          and Cape Town. Danielle Fraide is a qualified ICU sister employed by Medtronic, responsible for technical support to
                      The Cardiac Arrhythmia Society of                                  tation on the PMB clinical review committee of the Council      patients with devices like pacemakers and implanted Cardiac Defibrillators.
                      Southern Africa is an organization of                              of Medical Schemes.                                             Danielle assisted with the first implant of an ICD in South Africa in 1990 and is very knowledgeable on the practicalities
                      physicians, scientists and allied profess- CASSA is proud to be associated with sister organization                                of living with an implanted device. She shared her expertise on the operation of devices, how they function when fibrilla-
  Dr Ronald M Jardine  ionals throughout the subcontinent dedi- PACE and this year saw the first ever CASSA/PACE joint                                   tion occur and the affects of various medical procedures such as electroquatery and MRI scans.
                      cated to the study of management of car- meeting where treatment, care and support of patients suf-
diac arrhythmia. Its vision is to improve the care of patients fering from arrhythmia and related diseases was discussed                                 Patients and their families were interested to discuss their emotional reactions and needs once diagnosed, with Sandra
by promoting research, education and training and provid-                                at length. CASSA recognizes the important role that PACE        Hitchcock, a prominent Clinical Social Worker who specializes in trauma counseling. This presentation was followed by
ing leadership towards optimal healthcare policies and                                   plays in educating the public and other role players in South   a lively discussion on the interaction of families once they have been exposed to a medical trauma.
standards.                                                                               Africa on the importance of knowing the signs and symp-         PACE will continue to provide information and re-assure patients and carers that there is help out there and other people
CASSA has been fully operational since 1998. The Society toms of arrhythmia. It also financially supports some of the                                    that share their experiences.
operates as an educational institution of a public character, literature distributed by PACE.
providing specialized vocational training for medical spe-                               We are looking forward to an exciting year ahead during         INFORMATION AND SUPPORT GROUP
cialists, doctors, nurses, paramedical and other health care which PACE will be spearheading an awareness and edu-
workers, students, similar professionals and studentsRonald M Jardine        Dr to       cational drive on arrhythmia in 50 South African
prepare them for work in the field of management of cardiac schools.
                                                                                                                                                         CONTACTS
rhythm disturbances. CASSA further promotes collabora-                                   Together, and through their individual activities, CASSA        Cape Town                        Lusan Luscombe                                         082 6999 699
tion between members and provide facilities for data collec- and PACE are shaping and changing the arrhythmia market
tion on Arrhythmia and the use of ICD’s in South Africa.                                 in South Africa. CASSA will continue to support the PACE        Tygerberg                        Althea Goosen/Amorette van Greunen 021 9389484
The Society promotes research opportunities and participa- endeavors where we can in the future.
tion in National and International trials in the sub-specialty.                                                                                          Port Elizabeth                   Cheldene Fick                                           041 4662741
The Society represents the subspecialty to all relevant insti- For further information on CASSA and its activities, visit
tutions and offers consensus on issues in the sub-specialty www.cassa.co.za.                                                                             Bloemfontein                     Louise Cawood                                           084 606 3330
to professional societies, healthcare funders and industry in Dr Ronald M Jardine                                                  President: CASSA      Durban                           Juliet Rogan                                            084 205 9737
South Africa.                                                                                                                                                                                                                                                             Knysna
                                                                                                                                                         Johannesburg                     Tony Michler                                            072 174 0538
 MEDTRONIC
                                                                                                                                                         Pretoria                         Franciska du Toit                                       082 806 1599
                                  CareLink network enables remote monitoring

                                  With the launch of Medtronic's CareLink Net-
 Medtronic is enormously          work in South Africa, remote medical monitor-                                                                          PACE PEOPLE
 proud to be associated           ing will be taken to a new level within the lo-
 with PACE. Throughout            cal healthcare industry.
 the previous few years
 we have seen this                The Internet-based CareLink Network will
 institution grow from its        enable patients with implantable cardioverter-
 infancy into an                  defibrillators (ICDs) to transmit data from their
 organization that is truly       devices directly to their physicians as part of
 making a difference in           a 'virtual check-up'. Patients simply hold a
                                                                                             William Stranix and Mike Howe-Ely
 the lives of many South          hand-held antenna over the implanted device,
 Africans affected by             and information on how their hearts and ICDs
                                  are working is downloaded on to the Med-                   in the thoracic cavity. CareLink therefore                                                 Barry Kock, Cheldene Fick Port Elizabeth PACE representative, Dr. , Dr Spilkin,
 arrhythmias.
                                  tronic CareLink Monitor and transmitted                    reduces doctor visits, emergency hospital                                                  Prof AO                                                                            Tygerberg Genetics Lesson
 We applaud the
 wonderful successes              through a phone line to a secure website.                  admissions, and eases the financial burden
 PACE has made during                                                                        on patients and medical aids.
 2009 and look forward            Physicians can access this data - which is
 with anticipation to the         comparable to that gathered during an in-           "We hope to significantly improve the quality
 fruition of the great            office check up - and make adjustments to          of life of patients living with ICDs, who will be
 PACE projects planned            the patient's medication or prescribe addi-        able to live with far more peace of mind,
 for 2010.                        tional therapy, potentially without needing to     knowing that they can be in contact with their
 Our association with the         see the patient in person. Recently-available      doctors wherever they are, says Mike Howe-
 PACE organization is             ICDs are also compatible with Medtronic's          Ely, regional director of Medtronic as                                                                                                                                 Comrades 09
 consistent with our own          CareLink Network with Conexus Wireless             CareLink also allows patients to stay con-                          Prof Valerie Corfield giving     Annemarie Oosthuizen and
                                  Telemetry, which transmits patient and device      nected to their physicians, even when travel-                       “DNA” lessons at Tygerberg       Speaker Gill Davidson Cape Town
 Medtronic mission of                                                                                                                                                                                                            Speaker Danielle Fraide
 alleviating pain,                data automatically to physicians. These            ling.                                                                                                                                       Johannesburg                PACE AGM 09            Speaker Sandra Hitchcock Tygerberg
 restoring health, and            hands-free transmissions will be sent through      The Medtronic CareLink Network was first
 extending life.                  if the patient's device detects a problem, such    introduced in the US in 2002 and is also
                                  as an arrhythmia.                                  available in most Western European coun-
                                                                                                                                                                                                       Althea Goosen
                                                                                     tries. In South Africa, CareLink will also soon
                                                                                                                                                                                                       Tygerberg
                                  CareLink can also monitor and alert a pa-          be compatible with pacemakers and implant-
                                  tient's clinical condition regarding fluid buildup able cardiac monitors.                                                                        Dr Nico vd Merwe Bloemfontein
WORLD P a g e 6 RHYHTM WEEK
      HEART                                                                                                        P a g e   6
                                                                                                                                 MY PEARL HARBOR by Fiona Krisch                                                                                                            P a g e   3


                                                                                                                                 It’s said that everyone has a moment               treated it could possibly kill me and my           aerobics or heavy gym sessions.
PACE once again participated in World Heart Rhythm Week and proudly be-                                                          in their life, a date or event, something          daughter one day. All it would take
came the first support organization in the world to establish arrhythmia aware-                                                  that blasts familiar things out of exis-           would be one of our usual triggers — The swimming part is not easy in my
ness in pharmacies. We partnered with 100 Scriptnet and Dischem Pharmacies                                                       tence.                                             shock, fright or intense exertion — and
                                                                                                                                                                                                                         daughter’s case. Before the diagnosis
as well as PHD Distributors from 8-14 June 2009 and ran a campaign “Know                                                         South Africans will never forget the               we could go into cardiac arrest. The she’d already shown signs of being a
Your Pulse”.                                                                                                                     tragedy of the Laingsburg floods in Jan            heart would start to beat too fast   proper little fish in water, but now that
                                                                                                                                 1981 or the Westdene Dam bus disas-                (fibrillation) and unless it was stopped,
                                                                                                                                                                                                                         she takes beta-blockers we have to
     Each participating pharmacy received 5 red PACE/Know your Pulse T-shits                                                     ter, while the Americans had 9/11 in               that would be the end.               watch her carefully. Swimming, in par-
for the staff to wear to create awareness inside the pharmacy                                                                    2001 and Pearl Harbor on Dec 7 1941.                                                    ticular, can be a big trigger for LQTS.
     Each participating pharmacy got 2 WHRW posters which advertised this                                                        Scroll forward to almost the same             How did LQTS show up?                     The limitations of beta-blockers have
campaign at the pharmacy door as well as on the door of the clinic inside the                                                    date, Dec 6 2005, and you’ll find my          The doctor had picked up the pro-         now made it so that she can’t swim
pharmacy.                                                                                                                        Pearl Harbor. That’s the day I found          longed QT interval on my daughter’s       fast – an easy breaststroke is her
                                                                                                                                 out that my daughter and I have LQTS          ECG. He’d done his calculations and       maximum – but she still pushes
     The ‘Know your Pulse’ check cards were given to the dispensary staff as
                                                                                                                                 — Long QT Syndrome.                           there it was. He then asked me to         boundaries by diving and doing crazy
well as the front shop personnel and every person who entered the pharmacy
                                                                                                                                                                               have an ECG right away, even though stunts in the pool. But we (her mom
during the period 8 – 26 June got one of these pamphlets. In many pharmacies,                                                    “Long QT - a genetic mutation - is de-        his was a pediatric practice — I’d been and dad) are always in attendance at
the clinic nurse would be available to assist members of the public to take their                                                scribed on the Mayo Clinic website as... a    diagnosed with another heart condition the poolside, just in case. She is not
pulse.                                                                                                                           heart rhythm disorder that can potentially    two years earlier after blacking out      allowed to swim at school, however. I
     The ‘Arrhythmia Checklists’ were given to the Pharmacy Clinic Sisters to                                                    cause fast, chaotic heartbeats. The rapid     while driving to work — because his       just don’t think that they fully grasp that
complete with all patients who came in for any ‘cardiac related’ test, e.g. BP,                                                  heartbeats, caused by changes in the part
                                                                                                                                 of your heart that causes it to beat, may
                                                                                                                                                                               questioning of my late father’s medical we mean one-on-one attention is re-
                                      cholesterol etc.
                                                                                                                                 lead to fainting. In some cases, your heart's history, and my grandmother’s history quired when she’s in water.
                                                                                                                                 rhythm may beat so erratically that it can    as well pointed to a congenital prob-
                                        Contact was made, either face-to-face or                                                                                               lem. And so there it was, my Pearl        There’s been mention made of getting
                                                                                                                                 cause sudden death.”
                                        telephonically for the pharmacies outside                                                                                              Harbor, with fallout in every direction.  an AED for my daughter – an auto-
                                        of Gauteng, with both the head pharma                                                    So why would I only find out, in my                                                     mated external defibrillator – but they
                                        cist as well as the clinic nurse of each                                                 forties, that I had LQTS?                     How do we live with it?                   are expensive, and the stigma she
                                        and every one of these pharmacies and                                                    Well, the fainting spells had originally      Well, my daughter and I take beta-        might carry, having to lug around a
                                        the feedback received was very exciting.                                                 been diagnosed as epilepsy, because blockers (Atenolol) which pace the                  “shock-box” everywhere, is not some-
                                                                                                                                 my brain had shown seizure patterns           heart to a specific rate - around         thing I’d like her to be burdened with
                                        The majority LOVED this campaign and                                                     that could loosely be ascribed to epi-        120b.p.m. in our case. This limits our    now. Neither she nor I have had any
                                        when the material we had printed lasted                                                  lepsy. Problem is that it wasn’t my           activity levels so that we can’t really   fainting episodes since our proper
                                        for longer than the proposed 8-14 June,                                                  brain, it was my heart. And my daugh-         exert ourselves to the point of fainting. LQTS diagnosis, and that must mean
                                        all agreed to continue with the awareness                                                ter had started getting fainting spells       It also blocks the effect of adrenalin on that the beta-blocker management is
                                        drive.                                                                                   from about the age of five. Only once         the heart so that any sudden fright or    working as it
                                                                                                                                 the real diagnosis was made did I find shock does not cause the rhythm to be should.
                                        We would like to thank the Arrhythmia Alliance UK for the sharing of their               out that it’s quite common for epilepsy disrupted to the degree that we go into
                                        campaign material and wonderful ideas and including South Africa in their                to be the diagnosis for someone who           ventricular fibrillation.
                                        educational efforts.                                                                     really has Long QT.                           We are also prohibited from actually      Finally, I used to
                                                                                                                                 Sitting in the pediatric cardiologist’s       doing anything strenuous – high-speed feel like I was
                                        PACE is looking forward to WHRW 2010 with much anticipation!
                                                                                                                                 office, one warm December afternoon, sports, like swimming or running, and I treading on bro-
                                                                                                                                 I heard the horrible verdict that this        often joke that I used to say it would be ken glass all the
RESEARCH UPDATE                                                                                                                  wasn’t just an inconvenience – as I           amazing if a doctor could say I am        time, watching
                                                                                                                                 had viewed it for most of my life – it        banned from doing aerobics. Little did I how we acted or
                                                                                                                                                                                                                         what we did, but        Fiona and Eloise
                                            families. With multiple cases sharing a  PFHB1 (Heartblock)                          was actually rather deadly, and unless know that’s actually possible, and I
                                                                                                                                                                               was directed to do exactly that – no      now it has settled into a way of LIFE.
                                            mutation, this presents an opportunity   This is a ventricular conduction disor-
                                            to ask questions about a variability.    der where slowed conduction may lead
                                                                                     to complete heart block, a condition
                                                                                                                                 MEDICAL SOCIETY MANAGEMENT
                                            LQTS (Long QT Syndrome) This is          where the heart beat is much too slow                                MSM - Medical Society Management
                 Prof Paul Brink
                                            an electrical disorder where the recov- to fulfill its pump function properly. The                            Since September 2008, MSM has been appointed to assist PACE with raising sponsorship and strategic business manage
HCM (Hypertrophic Cardiomyopa-              ery after a heart beat is somewhat pro- rogue gene has recently been found                                     ment of the organization. MSM - Medical Society Management - was formed to expand services rendered to Societies and
thy) HCM is a strongly inherited dis-       longed (hence the name) and is also      in a group of families that can trace                                 other non-profit organisations. It is run by George Nel, an independent consultant to the Medical, Pharmaceutical and De
ease of thickening (hypertrophy) of         strongly inherited. Collaboration be-    its ancestry back to one Portuguese                                   vice industry since 2003 and Franciska du Toit who joined MSM in July 2008 to focus on operational issues as well as
heart muscle with a precipitous unfore-     tween Stellenbosch University, Prof      individual who landed on the shores of                                expanding the financial viability of organisations that are contracted with MSM.
seen death in a minority of carriers.       Paul Brink and Prof Peter Schwartz       the Cape at the end of the 17th century.                              MSM and PACE
Not all carriers display hypertrophy, yet   and Dr Lia Crotti from University of                                                                           he past year has been an exciting one for MSM as it got to know the people and the networks involved with PACE.
may be of the minority with risk of pre-    Pavia, Italy, and Prof Al George from PFHB11                                                                   We developed a new understanding for patients and families affected by arrhythmia and got to work with interesting
                                                                                                                                   Franciska du Toit
mature death. The search for genetic        Vanderbilt University, America, is on- Another form of heart block (called                                      people both locally and abroad.
factors that explains this variable pro-    going. A number of causal mutations      number11), as it has also been              MSM assisted PACE in the organising and implementing of amongst others, the Know your Pulse Campaign during World Heart Rhythm Week. It
file and risk is ongoing at the Magic       have been identified. One, represent- uniquely described in south Africa and         also facilitated negotiations with Dischem in which the latter agreed to partner with PACE to become an information portal for patients and families
Lab at Biomedical Health Sciences           ing about 40% of index cases (only       reported simultaneously with PFHB1,         affected by arrhythmia.
and the Department of Medicine, Stel-       first identified case is counted) of     is also being studied. Here the prob-       2010 promises to be a big year for MSM and PACE as it launches an awareness and educational program at 50 schools in South Africa. This pro-
lenbosch University by Prof Paul Brink      LQTS identified to date, is particularly lem lies above the ventricles at the        gram will run in conjunction with the FIFA Soccer World Cup as well as World Heart Rhythm Week 2010. Part of this project is a research arm in
and Prof Hanlie Moolman-Smook.              common and could be traced to a cou- interface with the right atrium where           which Prof Paul Brink (University of Stellenbosch) will conduct a study to obtain the first ever truly South African data on the prevalence of arrhyth-
Some of the causal inherited defects        ple that settled in the Southern Cape in the natural pacemaker of the heart          mia in the young.
(mutations) occur in many different         the early 1700’s.                        resides.                                    To get involved in any of the above projects or to find out more, contact Franciska du Toit on franciska@cassa.co.za or 0828061599
                                                                                                                        P a g e   4                                                                                                                    P a g e   5
TOOLS OF THE TRADE                                                                                                                     MARATHON DES SABLES
In the world of Cardiology, devices like pacemakers and defibrillators are to heart problems                                           Fundraising for a Patient Support Fund in what is reputed
what the wheel has been to transport – life changing. And just because they work well doesn’t
                                                                                                                                       to be the toughest footrace in the world, Prof AO Okre-
mean the world of medical science isn’t still improving on them every day.
                                                                                                                                       glicki became the first South African to complete the gru-
As opposed to a bypass – which is in actual fact a medical ‘plumbing job’ (making                                                      elling Marathon des Sables in Morocco in April this year.
sure all the pipes – or arteries – are clean, working and supplying blood to the rest of                                               This year the event was staged over 202 km to be com-
the body), devices like pacemakers and defibrillators are the answer to electrical heart
                                                                                                                                       pleted in a period of 5 days. In addition to treacherous
problems – where the messages sent to and from the heart regulating the pumping
are abnormal. Prof AO Okreglicki explains that you can have “great blood supply, but                                                   terrain and very challenging weather conditions, partici-
no electrical signal to tell the heart when to pump.” It’s in these cases that the help of                                             pants are required to carry their own food and gear - only
certain devices are called in.                                                                                                         water and rudimentary shelter is provided.
                                                                                                                                       Torrential rains, floods and biting winds preceded the 24th
Keeping up the pace Of all the devices used in Cardiology, the pacemaker is the oldest. This little intuitive tool – not
much bigger than a Kruger Rand – is used when a heart is pumping too slow, or missing beats. “We all have natural                      Marathon des Sables. The 807 competitors that set off on
pacemakers,” says Prof Okreglicki. “But when their signals do not reach the heart, a pacemaker is needed. When the                     the first stage of 33 km were faced with slippery mud just
heart is pumping too slow, or when there are pauses in the beats, the device sends electrical signals to induce the heart-             below an apparent dry surface and rocky hills of soft          The sand and soft running was enormously energy sap-
beat. So a pacemaker works only when needed and sends signals when it detects an abnormality in your heartbeat.”
                                                                                                                                       sand. Day 2 presented an even tougher terrain of vast          ping. Day 3 and 4 comprised a total distance of 91 km to
Implanting a pacemaker is a relatively small operation, and the device is typically placed under the skin below of the col-
larbone, with a wire leading to the heart. Its battery can last from 6-9 years (depending on how much the device is used),             stretches of rolling sand dunes and flat plains of gravel      be completed against a constant strong, dehydrating
but needs to be checked once a year. Once it expires or is flat, the whole device needs to be replaced.                                that appeared good to run on, but turned out to be similar     headwind with heat and dust-storms. “The last 40 km
                                                                                                                                       to dry meringue which crushed under foot once the crust        turned out to be my favourite section: firstly a climb up a
Split-second timing “A modern defibrillator is in actual fact a very special pacemaker,” says Prof Okreglicki of the de-
                                                                                                                                       was penetrated.                                                gorge of rocky mountain with magnificent vistas from the
vice that is perhaps better known as two bats resembling paddles that are used in medical TV dramas like ER and
Grey’s Anatomy. “Now imagine those paddles as being much smaller, and as implants,” he says. Miniaturised to the size                                                                                 top just before sunset and then dunes and the vast Saha-
of an MP3 player, defibrillators can now, like pacemakers, be implanted under the skin (also at the collarbone), and are                                                                              ran plains strewn with rocks all made magical by the
called ICDs (implantable cardiovascular cardioverter defibrillators). They come standard with a built-in pacemaker, in the                                                                            moonlight and a course marked by luminescent sticks –
event of the heart beating too slow, or experiencing irregular pauses between beats. The American Heart Association
                                                                                                                                                                                                      absolutely brilliant! “Says Prof AO, the President of PACE.
sums defibrillation up as “the use of a device that gives an electric shock to the heart. This helps re-establish normal
contraction rhythms in a heart having dangerous arrhythmia (a heart beat that is dangerously fast) or in cardiac-arrest.”                                                                             He finished this stretch in a comfortable 13.5 hours.
                                                                                                                                                                                                      Having completed 4 days and 160 km in severe condi-
“If a heart goes too slow, it doesn’t work, but similarly, if it goes too fast, it can also be very dangerous,” says Prof Okre-                                                                       tions, the athletes took the final stage and its tough terrain
glicki. “Going too fast means that the pumping action distributing blood through the body is not sufficient to stay alive.
                                                                                                                                                                                                      in their stride. Finishing 81st overall, AO described the
One minute’s delay can cost a life.” The ‘paddles’ have been around for 50 years and are applied on the skin on the
chest, sending currents through the body in an attempt to jolt the heart back into beating normally. “This is all fine within                                                                         Marathon des Sables as “much more than a run or a test
a hospital situation,” says Prof Okreglicki, “but what if the patient already has a damaged heart, and regularly have lethal                                                                          of athletic skill. It is a rite of passage; a test of one’s
electrical irritations of the heart that needs to be suppressed?” To some extent, this can be managed with medication,                                                                                preparation, mind and endurance, all with the magic and
but it won’t necessarily work every time, creating the need for a more sure-fire antidote.
                                                                                                                                                                                                      romance of the sand.
If medical practitioners were told a hundred years ago that
heart transplants, bypasses and even more ludicrous (at                        AED                      ICD                 ECG        PATIENT SUPPORT FUND
the time) – devices could be implanted to regulate heart                                                                               AO's participation in the MDS as co-founder and President of PACE, will benefit
beats, they probably would’ve been shocked. But given the                                                                              many South Africans. He raised R20 000! which enabled PACE to establish a
huge strides that have been made, and are still being
                                                                                                                                       Patient Support Fund. Families and patients affected by ARRHYTHMIA, or survi-
made, affordable devices that can prolong human life with-
out any long-term difficulties doesn’t seem so far-fetched                                                                             vors of sudden death, experience huge emotional challenges which need not be
anymore.                                                                                                                               aggravated by impossible financial burdens. The patient support fund will
                                                                                                                                       thus assist suitable applicants with costs related to arrhythmia procedures, device
COMRADES AND PACE!.............................                                                                                        implantation, treatment and care management. Fundraising for the FUND will be
                                                                                                                                       ongoing and a PACE TEAM of 15 athletes are already participating for PACE in
What a day ! Being behind a refreshment station gives one a different insight of the organization involved in an event of              the Half Ironman in January 2010!
this nature ! It certainly was a LONG day – for both the runners and organizers !                                                                                                            Prof AO, Lusan and THE CHEQUE!
                                                           Each station had to collect the supplies prior to Comrades day
                                                           – all 5 tons – and make sure they were delivered and ready on
                                                                                                                                      …...COMRADES
                                                           the day. This included 25 000 sachets of water, 5 000 sachets              runners though and many of them were swept of their feet        aged to ‘water’ a number of people. Although not ideal, it
                                                           of Energade, 14 cases of coca cola, 12 boxes of bananas, 12                when the ‘buses’ of runners came through. It proved to be       went a great way to assist very tired and thirsty runners.
                                                           pockets of oranges, and many biscuits and chocolates. That is              very exhausting trying to feed and hydrate the runners as
                                                           besides trying to keep sufficient ice and the drinks cool !                well as the volunteers !                                        I don’t know who was more tired by the time the last
                                                                                                                                                                                                      ‘runners’ came through – the runners or us. And then we
                                                               It was a very early start to the day. It didn’t help that the police   The worst was yet to come. Trying to clean up after thou-       still had to clean ! It was an extremely exhausting task for
                                                               decided to close all the roads considerably earlier than we had        sands of runners was also no joke ! It was impossible to        a group as small as ours but it was certainly an experience
                                                               been advised which made it more difficult and time consuming           imagine the litter that found it’s way onto the roads, so it    of a lifetime and although it was hard work, it was enjoyed
                                                               to collect the final items. But nevertheless, we managed to be         was another full time crew that tried to keep the roads         by everybody.
                                                               ready for the cut off time.                                            clean and safe for the runners. To top it all, a few stations
                                                               We were very fortunate to find a number of volunteers (more            around us, including ourselves, ran out of water sachets !      A special thanks to all those involved ! As for next year, it
                                                               than 50!) to assist for the event and they were all very eager to      Fortunately we managed to connect a hosepipe and man-           was a wonderful experience………                    Juliet Rogan
                                                               get started. The enthusiasm waned after the first few thousand

								
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