The day I was diagnosed with scleroderma 21 years ago was devastating for my parents and me, to say the least. I was 15 years old and I remember thinking: I have what? Scleroderma? What is that? Can you spell that?
Not much was known about the disease and, since the Internet was in its infancy, we couldn’t simply Google “scleroderma” to learn more about it or find support groups. There was no one to bounce off ideas with. My father, who was a diligent researcher, consulted medical textbooks. Meanwhile, my mother, who was born with the “gift of gab,” sought information from anyone and everyone who crossed her path. But ultimately we were forced to rely heavily on doctors’ recommendations, which sadly were pretty gloomy and a bit much for a teenager to handle.
Fast forward to today. When I have a question, I connect with my local chapter of the Scleroderma Foundation, either by e-mailing a board member or by attending a support group meeting. I also go online to the Raynauds Association, Scleroderma Foundation and Pulmonary Hypertension Association. Above all it’s important to find a rheumatologist who is not only knowledgeable about scleroderma, but has a good grasp of its complexities and is willing to help you get the results you need. Trust me – they are out there!
Back in 2004, I decided it was time to get a new rheumatologist. I asked around for recommendations from my personal network and a friend with rheumatoid arthritis suggested I see her physician. Before meeting the doctor, I looked at his online reviews from other patients and his curriculum vitae to get a sense of his academic and professional experience and achievements. When meeting with a new physician, it’s important to ask if she/he has treated other scleroderma patients, gauge their knowledge of clinical trials, find out if they are up to date on the medications being used to treat the different facets of the disease, and make sure they understand the importance of certain annual tests.
When I switched rheumatologists, I had a particular problem I needed to solve. For the most part my illness had become stable, but I had one pesky ulcer that was truly relentless! I tried various calcium channel blockers, ACE Inhibitors, and Vasodilators, and nothing worked. The infections were getting out of control, even though I did my best to stay on top of it. My frustration reached a point where I asked my doctor to “please, remove the first flange of my index finger.” Thankfully he refused and said, “No, we’re not going to give up.”
Through his connections, he contacted a colleague, who was part of the pulmonary and critical care division at a neighboring teaching hospital. The physicians worked together to get me access to Flolan, a pulmonary hypertension medication that had the potential to clear up my ulcer. Unfortunately, I had to be hospitalized to receive the medication so over the course of the next few years I was in and out of the hospital numerous times for two-week periods.
Growing tired of this routine, my doctor visited www.clinicaltrails.gov and found a pilot study led by Lorinda Chung, MD, director of the Scleroderma Center at Stanford, evaluating the efficiency of another drug, called Ambrisentan, for treating digital ulcers. I was enrolled in the trial and traveled to Stanford monthly for evaluations and blood work. If you’re offered a clinical trial, ask about reimbursements for travel costs, if any hotels in the area provide discounted rates to patients traveling to the medical center, or reach out to friends and family for a place to stay. Hold fundraisers or garage sales to help offset the costs. And try to carve out time to have some fun, so it’s not all gloom and doom.
The trial helped to clear up the majority of my ulcers, but the one on my index finger remained. So I had to turn to another treatment option. Through Dr. Chung, I met James Chang, MD, division chief of plastic and reconstructive surgery at Stanford. Dr. Chang performed on me a digital sympathectomy. During this procedure, he made incisions on my wrist and palm to carefully release the scar tissue that was constricting blood flow to my fingers. It took me three years to find a solution to my pesky ulcer, but I’m happy I didn’t give up! I avoided amputation and kept my finger.
If you’re having difficulties finding answers to your own hard-to-solve problems, I recommend:
- Not being afraid to try different options: Review the clinical trials registry from time to time. Involve your rheumatologist and ask which ones might be a good fit for you. Without patient involvement in medical research, there will be no advancements in diagnosis and new therapies.
- Staying informed and connecting with a support group: If you don’t have a support group near by, reach out to one in another city via e-mail or a video chat service. Never be afraid to ask as many questions as you need to and ask someone to be your advocate to ask questions during doctor’s appointments.
- Involving other specialists in your care: For those times when your doctor seems to have exhausted all the options, ask her/him to collaborate with another physician (a dermatologist, gastroenterologist, etc), who might have access to different treatments and medications.
Melissa Warde grew up in Sonoma County, Calif. and currently resides with her husband in San Diego. Her passions include exploring different cultures and traveling, her spiritual life, and spending time volunteering in the community, helping those with and without scleroderma to improve their lives. Warde participated in our recent Ask Stanford Med Google+ Hangout on scleroderma.
Previously: Ask Stanford Med: A focus on scleroderma, Another piece of the pulmonary-hypertension puzzle gets plugged into place, Patients with rare diseases share their extraordinary stories and Restoring hand function with surgery