CONNECTING PATIENTS AND DOCTORS: THE STORY OF PHA SOUTH AFRICA
By Sharon Chetty, Founder
Editor's Note: It is with a heavy heart that PHA must report the passing of Sharon Chetty on May 29, 2008. Her story is one that continues to inspire many around the world to keep fighting no matter what the odds, because one person can make a difference.
When I was diagnosed with what was then called primary pulmonary hypertension (PPH) in October 2001, I was shocked at the rareness of this condition. At first, when I was introduced to a PH patient who seemed to be doing well I was hopeful. However, I became very depressed after he passed away just a year after we met, barely five years after his diagnosis. After learning about PHA and its services through my youngest sister, I was amazed at the number of PH patients and support groups around the world and the intense work that was going on. This was the start of my own recovery.
All this inspired me to start my own support group and I realized that my purpose was to make a difference in South Africa. The South Africa Support Group was started in October 2004 with seven members. The group is a source of support and gives us hope and encouragement; we know we are not alone.
We soon realised that many of our doctors knew little about PH and that raising awareness was crucial. I sent articles to local newspapers and electronic media and I even managed to have them published in four different newspapers. Not everyone accepted my story with open arms. It was frustrating and disappointing to learn that the two radio stations and TV talk show I had contacted felt that there were too few PH patients for it to be feasible to air the topic.
Due to the lack of proper medications and care (there are no PH treatments approved in South Africa), I lost five members between 2005 and 2006. They were all under the age of 40 and lived less than five years after diagnosis. This only made me more determined to be heard. I managed to set up a meeting with the local health department. At this meeting, we discussed the importance of creating awareness among the general public and especially in the medical community.
The meeting, however, was not successful because of the “insignificant number of patients.” In South Africa, PH is so misdiagnosed or diagnosed so late that the survival rate is very low. Despite this setback, I placed posters and articles in our local libraries for people to learn more about PH. On August 9, 2005, I spoke about PH and the plight we face in our country at a woman’s day teacher’s forum. I continued to write to the Minister of Health (with no response), and tried to get through to people at the health department. Finally in April 2006, I met with officials from the Department of Health and three pulmonologists. We discussed my objectives in creating awareness and my involvement with PHA. A decision was made for a proposal to be drawn up by one of the pulmonologists, highlighting the need for a PH centre where clinical trials can be done. Much to my dismay, the pulmonologist never sent the documents to the Department of Health. The frustration continued: people just did not seem to care enough.
In June of 2006, I returned from PHA’s 7th International PH Conference in Minneapolis, Minn. with a renewed hope. Whenever I came up against a ‘brick wall’, I would think of other ways of trying to get media attention. My last resort was to contact the medical school and speak to professors who lecture to medical students and to try to convince them to include PH as an important part of their syllabus. Including PH in the curriculum would mean that new doctors would have a sound knowledge of how to diagnose and treat PH. This was how I got into contact with Professor Umesh Lalloo, who runs the largest pulmonology unit in KwaZulu-Natal. We met and discussed the possibility of a PH clinic. I am thrilled that on May 7, 2007, the first South African PH Clinic was opened at the Inkosi Albert Luthuli Hospital in Durban. I am working towards getting media coverage about the clinic to spread to all the provinces in South Africa. I hope that these efforts there will lead to diagnosis and more patients registered at the clinic. Hopefully the clinic and increased awareness will motivate the government to fund clinical trials for medications that are already used around the world.
PH South Africa now also has a website (www.phsa.co.za). Through these small steps and struggles we are starting to make a difference. I look at my illness not as a burden, but as a blessing. If it were not for PH, I would not have met all these wonderful, caring people from around the world. With determination and perseverance, I hope to fulfill my purpose in life and help others cope with this deadly disease.
To anyone working towards creating a PH association and raising PH awareness in your own country I have only one piece of advice: keep trying and never give up. It is an uphill battle but do not let that despair you and keep trying, because someone will eventually hear you.