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Heidy's Story

Heidy Dornau tells her story to Scleroderma Exchange. In addition to being a scleroderma survivor, Heidy began leading a Tri-State Chapter support group in the Nassau-Queens area in May of 2012.

Heidy DornauWhat was the process of searching for a diagnosis like for you? How did you get to where you are today?

As I look back on the last 10-15 years, I realize now that I had quite a few of the symptoms of scleroderma. Unfortunately, my doctors were not that familiar with autoimmune diseases. I had pain in my joints, dry mouth, and gastro problems. The doctor said, “It happens as you get older.” I had severe gastro-related anemia with no explanation as to why. Then after several years of being treated for anemia, it got worse. I had to have part of my stomach removed to stop the bleeding. One year later, the bleeding had stopped, but now I was extremely tired and aching all over. I insisted on seeing a rheumatologist. I made the appointment and the doctor said I had either lupus or scleroderma. He did a blood workup and the results showed scleroderma (CREST). The only thing the doctor told me was that it was an autoimmune disease with no cure and medical science did not know what caused it. He told me to take Tylenol when needed for pain and we would keep an eye on my progress. No other tests were necessary, he said.

I joined the Manhattan Support Group in 2004 and made many new friends. They pulled me out of my slump and gave me answers to many of my questions. They not only gave me friendship and support but hope as well. They informed me that I needed to get a baseline and of all the tests that it would entail. Again, my doctor said it was not necessary. A few months later I was referred to Dr. Avram Goldberg, who specializes in scleroderma. Dr Goldberg confirmed what my friends at the support group said: I needed more tests performed to get a baseline. By this time I was very short of breath. He sent me to Dr. Arunabh Talwar, who is now my pulmonologist. Needless to say, for the next six months I was busy having all the necessary tests that Dr. Talwar requested. I’m on oxygen 24/7 and I now have all new doctors. All of them work together as a team. I now feel confident that they will be there for me.

What is the most difficult part of living with scleroderma?
The most difficult part has been my anemia and gastro problems. The scar from the surgery left me with a double hernia. I have difficulty swallowing and digesting solid foods. And of course there are other medical issues which I have learned to live with. Another issue is that the public doesn’t realize how debilitating scleroderma can be.

Why did you take the lead in creating a new support group?
I’m amazed at how many doctors are not that informed with auto immune diseases. A lot of time was wasted before I was properly diagnosed. The public needs to be made aware of how debilitating this illness is. Dr. Talwar suggested I start a group about one year ago. But due to another medical issue I was not able to work on this. On May 5th 2012, I am starting the Nassau-Queens Support Group. I found that the Manhattan Support Group was a blessing! They are always there for me and will always be part of my life. Unfortunately, there are no support groups in Nassau or Queens where I live. It is difficult for some of the patients to get into Manhattan. I’m looking forward to this gathering. I want to help my fellow patients. A diagnosis of scleroderma is frightening. For many people it is difficult to accept and we feel at a loss. What will happen next? We don’t know. But with guidance from the Support Group and the Foundation we will make the journey together.

What do you do to get through those really bad days?
I find when I have a really bad day the best thing for me is to call someone else up and listen to their troubles. I then say to myself, Hey, Heidy, you’re not so bad off. Things could be worse! And it helps me get over my slump. Even though I will have my own support group, I still plan to attend the one in Manhattan as well as those in the tri-state area. I find that I always learn something new at these meetings which I can share with my group. I give thanks to the Foundation for all their guidance and especially to my family at the Manhattan Support Group!

 

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