Joy Blanc, 34, lives in the Bay Area of California with her husband and daughter. She was diagnosed with scleroderma and related conditions five years ago shortly after the birth of her daughter. Her father battled the same disease for 16 years.
Tell us about your diagnosis.
It really started 10 years ago. I was a healthy 24-year-old moving up the professional career ladder. I started having pressure in my chest and ultimately wound up in the emergency room. They found that I had pericarditis (inflamed linings of the heart). I was given medicine for that and sent home. I did research and found that pericarditis can be caused by lupus. Since my sister had lupus I went back to my doctor. She sent me to a rheumatologist who ran tests and confirmed that I had lupus.
But it wasn't until after your daughter was born that you were diagnosed with scleroderma?
Yes. I had gotten married and my husband and I wanted to start our family. I had a lot of difficulties staying pregnant. I had four miscarriages and my daughter was born 10 weeks premature. After I had my daughter I started to have difficulty breathing. This went on for a year and a half before my doctor finally referred me to a team of experts at the University of California San Francisco.
They quickly diagnosed that I had a mixed connective tissue disease with overlapping lupus and scleroderma. They also found I had pulmonary arterial hypertension and interstitial lung disease which resulted from the scleroderma.
How are you managing your health?
In a number of ways. I am taking methotrexate which has helped keep my lungs stable from the impact of scleroderma. Exercise is also key. I used to love to run. I can't do that anymore but now I row (with a rowing machine) for 30 minutes and walk for 30 minutes about four times a week. I learned how best to exercise during a really helpful pulmonary rehabilitation course.
Just about a year ago I stopped working to really focus on my health. When I was working I felt that I was running a marathon every day. Stopping work has allowed me to be more mindful of my energy levels and take rest when needed.
Tell us about your family history?
I have a strong family history with autoimmune conditions. My dad had scleroderma and two of my sisters now have lupus. When my dad was first diagnosed, he was told he had 9 months to live. Thanks to treatments, he lived 16 years before passing away two years ago.
Who are your key sources of support?
My husband is a huge source of physical and emotional support. My five siblings are my built-in best friends. My two sisters with lupus really get what I'm going through. It is so nice to have that bond and understanding.
What is your advice to others who are living with scleroderma?
Know that you are not alone. There are a lot of people who have it and many who are doing research and others working to help you.
Also, you have to be your own advocate. Many times over the last 10 years doctors seemed to downplay my symptoms. I had to keep pushing until they figured out what was wrong. I think because scleroderma is not that common, doctors don't run into many cases. So they don't recognize it or feel comfortable diagnosing it. Getting to experts who deal with a lot of similar cases is really important.
