StoryCorps at SHC: Falguni Desai & Lorinda Chung

Falguni Desai (FD): I started getting symptoms August of 2018, and I started noticing that I could not open the car door easily, and I thought, oh, that's a bit weird. And then I started getting puffy fingers as well. Then I noticed my knees were stiff and hurting, and I started getting pain in my wrists. That wasn't normal for me. And so I did go to the doctors, my general GP, and she said, "Oh, it's carpal tunnel," and put me on six weeks of hand therapy. I knew it wasn't, but I didn't do any research or anything, right? So I went along, and then it actually got worse, and so I went to see a rheumatologist. He thought it was arthritis. Fast-forward to January 2019, I was off on a business trip and my face swirled up and I couldn't sit down, I couldn't do anything. So I immediately came back. I called my physician again, and it was on March 5th that finally the blood work came through and he said, "You have scleroderma."

Lorinda Chung (LC): How did hearing that impact you, and what was going through your mind at that time?

FD: He told me, "Oh, it'll go away in two years." That is something that still really haunts me, having now understood the nature of this autoimmune disorder. It was very hard for me. I started noticing more and more weakness, hair loss, fatigue. I couldn't function. And then December 14th, 2019, I was vomiting severely non-stop. I was actually going into renal failure, and so I was put in the ICU. I had all these tests. I can't remember that period. It was just so traumatic for me, but I started dialysis Christmas morning. So it was a very hard journey and I was very, very fortunate to then get under your care and under the Scleroderma Center. Through the help of you being the rheumatologist and all these specialists, my PT specialists, I became stronger and stronger, and I did get off dialysis, but scleroderma is the gift that keeps giving. And I know there isn't a cure for scleroderma, but if I can get these symptoms treated, then stay strong, I didn't want to give up.

LC: I definitely recall when we first met that you did already have that sense of hope, and you were determined to beat the disease. You had a very strong mind and definitely had a lot of family support, which is incredibly important for getting through those first few years when it's really challenging. So I remember counseling you, we've got to get through this really time. My goal was to get you to stabilize quicker and at a point where your disease had not progressed too far.

FD: There is life after being diagnosed with scleroderma, but you have to put the effort and work in. You can't just take your medications and then wait for the next appointment to see your physician. You need to keep moving your joints and your muscles. Know your body. If something doesn't seem right, doesn't feel right, let your physician know. There's no harm in just, hey, reaching out and just letting them know. If you don't feel comfortable with your physician that you're seeing, please ask for a second opinion, right? Ask the questions, go prepared. Partner with your physician. If you are an up-and-coming physician, then please take the time to listen to your patient. Be empathetic and guide them and work with them. And so I'm very thankful for how you've helped me, and I hope that while I'm still living, we can find a cure.

LC: I can't tell you how important every patient is to me. You have touched my heart in so many ways, and it is definitely my mission in collaboration with you and all my other patients to find a cure for this disease.

Produced by Stanford Health Care with interviews recorded in collaboration with StoryCorps, a national nonprofit whose mission is to preserve and share humanity's stories in order to build connections between people and create a more just and compassionate world www.storycorps.org

Sound Editor: Emily Hsiao

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