Queenstown, Eastern Cape (South Africa)
TRACEY DE KLERK
Scleroderma Stories Issue 1
What led to your diagnosis
It happened in 2014. I was coughing constantly, so my doctor had me tested for TB. Then, I started having body pains so bad that I could not get out of bed.
My doctor referred me to Port Elizabeth, a big city where they have better medical facilities and specialists. I had two specialists, a pulmonologist and a rheumatologist, look me over, and they suspected scleroderma.
All of my blood tests came back normal, but my chest x-rays and CT scan showed a problem with my lungs. They booked me into the hospital for a lung biopsy, and the results came back positive for scleroderma. The doctors put me on Prednisone and an autoimmune suppressant.
Could you please tell us how you felt after being diagnosed?
I had never heard of this disease and was in absolute shock. I just could not get over the fact that I had this fatal disease as I had been so healthy my whole life. It was so devastating hearing this news.
In what ways has scleroderma affected your lifestyle or mindset?
I have been a teacher for 23 years, but in March of 2019, I had to resign from my job. My lungs got so bad that I could no longer cope with work.
During the summer, it is easier for me to get out and do things, but winter is not pleasant. I don’t go out much in the winter.
I still struggle at times to come to terms with this disease. It is absolutely awful. I feel so hopeless and helpless at times, as I can no longer do what I used to. Even taking a shower has become a major hurdle.
What helps you stay positive and continue to fight this disease?
I am married to an amazing man, Steve, who encourages me. I also feel extremely fortunate to have parents who are still alive, live close to us, and can also help and support me.
What advice do you have for those with scleroderma or other chronic illnesses?
Make sure your family and close friends understand this disease so that they can support you.
Being honest about how you are doing is important. There is no use in telling your family that you are fine when you are not. They need you to constantly keep them informed in order to be able to help you. My friends know to phone me before they visit. Otherwise, they may pop in when I am not capable of having visitors and will have wasted their time coming to see me.
I suggest doing your shopping online and having it delivered to your house. I also recommend using cannabis oil if you can. It helps with pain and lets me sleep better at night.
Be sure to follow us on Instagram and Facebook (@sclerounited) to see more scleroderma warriors’ journeys in our weekly Sclero Sunday series.
Are you a scleroderma warrior? We’d love to interview you for Scleroderma Stories! Please visit tinyurl.com/share-my-sclero-story or email us at contact@sclerounited.us
