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Patient story

Sharon ChettySharon Chetty

My name is Sharon Chetty and I am a 42 yr old mother of two boys aged 17 and 21. In 1998, I was experiencing slight shortness of breath and lots of coughing and was being treated for asthma. After being on treatment for over two months, there was no change and I started seeing different specialists and physicians with no joy. I had ECG's done, plus x-rays, but nothing could be picked up. As my condition worsened, I eventually decided to see a pulmonologist in June 2001. He did a lung function test, checked my x-rays and said he could not see much wrong and prescribed a nasal spray and a cough suppressant, as he thought it could be a post nasal drip causing the cough.

At this stage I thought I was paranoid and decided to ignore my symptoms, but by October 2001, I started getting worse. Climbing stairs caused my pulse to race and I felt dizzy and the coughing got much worse, but because the doctors told me they could not find anything wrong, I still ignored the symptoms until my son got the flu and I had to take him to our G.P.

The G.P. heard me coughing continuously and asked me what was wrong and after I explained my entire story to her, she decided to check my pulse, which was racing. She said that it was not normal and suggested I see a cardiologist, which I did the very next day. He requested that I have an angiogram done and then followed it with a VQ lung scan and this was when I was told that I had PPH. At first, I was depressed and angry that it was not diagnosed earlier; but as I got more information on PPH, I realized it was not easy to diagnose. Especially in South Africa, where I live, most people are unaware of this condition.

I was diagnosed in November 2001 and soon after met another patient who had been diagnosed three years prior to me. After meeting him, I felt much braver as he seemed to be doing well, but a year later he passed away and this was a shock to me. That got me very depressed. I was not sure how much time I might have and so I decided to do some research on my own. Through the help of my sister, who is a pharmacist, I got in touch with people via The PHA and I was encouraged when I received responses from whomever I sent e-mails to. This was the beginning of the recovery process.

I decided to do something rather than feel sorry for myself and so after reading about the support groups, I decided to start one here. Through a local community newspaper, I sent an article regarding PPH and what it was all about and gave my details for people to contact me. To my surprise I had two people phoned me that had the same condition. We then set up a meeting and talked about our medications and this was when we realized that Viagra was proven to help in reducing the pressure in our lungs. Unfortunately, the medical aids and pharmaceutical company would not sponsor or cover this drug, but it was tried on two patients. It seemed to help initially but after a few months, the pressures picked up again. I am currently on Lasix 40mg and 1/2 warfrin daily.

I am so proud of being part of the PHA and being able to help someone else, that sometimes I forget that I have this disease. I focus on other members and their well-being and thanks to the PHA and their abundant information with brochures, action kits and CD's I am well equipped to take on the media and make the public aware of this disease.

Although this year, 2005, has been a trying year for me since we lost 4 members to this disease, I still remain positive and am trying my utmost to make a difference in the lives of the remaining PH patients and to create an awareness.

I look at my condition as a blessing because if I did not have this disease, then I would not have been able to equip myself with the knowledge I have of PPH and would not try and help others with my support and encouragement. This disease has taught me a lot about life and about appreciating the little things in life.

I believe that if each one of us in this world could help one other person to become a better person then our life on earth would be worth living and this world will be a better place to live in. Just being there for someone in need is sufficient and would help fulfill our human duty.

Keep well and God Bless!!!

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.