Living with Scleroderma

Why Research Matters to Rae

By August 23, 2021No Comments
Rae on why research matters to her

Rae is a medical researcher, a self-described nurturer and dreamer–and someone who lives with scleroderma. In our conversation with her, Rae talks about her journey to being diagnosed, how it has changed her life, and why research matters to her.

Here’s what Rae shared with us.

What was your journey from symptoms to a scleroderma diagnosis?

My scleroderma symptoms first started in April 2016 when I started waking up every day with swollen fingers. I assumed that the swelling was something in my diet and hadn’t thought much about it. I had some other subtle symptoms, such as muscle weakness and soreness, and felt a bit more tired than usual. However, at the time I was a busy PhD student and was working out a lot more, so I assumed that the other symptoms could be explained away by my lifestyle.

In April 2016, my mom urged me to visit a doctor while I was home to follow up about the finger swelling. She ran a basic blood panel, and a few weeks later I got a call from her office stating that my ANA [Antinuclear antibodies] test was abnormal, and I should follow up with a rheumatologist. I initially saw a rheumatologist in July 2016. He ran every test under the sun, but nothing came back positive. He said that he knew something autoimmune was going on with me, but it just wasn’t showing up in my blood yet for whatever reason, so he sent me home and told me to follow up in a year.

Several months later in January 2017, I returned from Winter break and realized I could not walk to my classes without getting incredibly winded. Soon I was at the point where I could not even walk 10 steps without needing to take a break. At this point, I followed up with my rheumatologist, who diagnosed me with scleroderma in March 2017. I was subsequently diagnosed with pulmonary arterial hypertension (PAH) in April 2017.

How has scleroderma most changed your life?

I have become a completely new person since my scleroderma diagnosis. There are a whole slew of physical changes that come along with this disease, so my body doesn’t really feel like my body anymore. It is almost like my old body disappeared in the middle of the night and was replaced with a body that is constantly sore, tired, and full of food that won’t move quickly enough. I also don’t recognize my face anymore and went through a period of time when I couldn’t look in the mirror.

Aside from these physical changes, scleroderma has tested me mentally and emotionally almost every day. Life is hard enough, but it becomes so much more challenging when you’re a patient and have to balance appointments, blood work, medications, and phone calls managing all of your care. 

Through it all, though, I think scleroderma has forced me to become an incredibly resilient person. I have had to face some incredible obstacles and navigate a lot of challenges due to scleroderma and PAH, but I haven’t given up and have developed some thick skin (literally and figuratively) in the process!!

You’ve shared with us that you are participating in the 23andMe Systemic Sclerosis research study. Why is participating in research important to you?

Research really only works if people from all different types of backgrounds get involved. A historic problem with any sort of research is that it has typically been performed on mostly Caucasian adults, so the question then becomes how applicable is this to the general public which was a much more diverse make up? So, on the one hand, participating allows me as a young, African-American female to represent those who have typically gone underrepresented in medical research.

Beyond that, though, I really believe in research. Something that has always resonated with me since getting diagnosed with PAH especially is that years ago, the only treatment for PAH was a lung transplant. Although there is still no cure for PAH, years of research have afforded the opportunity for all types of pills and medical pumps to be created which can treat PAH. I have benefited from some of those products that were derived from that medical research and none of that would have been possible without those initial research volunteers. Therefore, my participation in research is really a “thank you” and a way to pay forward all the hope I have been granted through all the research that has come before me.

What do you think people with scleroderma are most hopeful for from scleroderma research? What do you hope to see happen?

Being a researcher myself who has worked with patients with other serious illnesses such as amyotrophic lateral sclerosis (ALS), I think patients derive a lot of hope from hearing and reading research and understanding that there are people out there who are concerned with their well-being and improving their lives. Research can be a slow process at times with not a lot of instant gratification, but I think for me at least, I derive hope in knowing that it’s always happening and with every research study, we are on the verge of the next breakthrough.

I think it would be wonderful if one day we could get to the root cause of scleroderma. I have done a lot of reflecting and blaming myself that perhaps I caused my scleroderma in some way. Although deep down I recognize it was probably just some genetic or environmental fluke, it would still be a great relief just to know why this happened. I also think if you know why something happens, we can develop more effective treatments to either prevent it from happening or cure it altogether.