When I was first diagnosed with scleroderma, I had no idea what it was. All I knew was that I was scared, and I felt alone.
But as I started to research the disease and connect with others who were living with it, I began to learn that I wasn’t alone at all. In fact, there are millions of people around the world who are living with this rare autoimmune disease.
What is Scleroderma?
Scleroderma is a chronic, progressive autoimmune disease that causes the overproduction of collagen in the skin and internal organs. This leads to hardening and thickening of tissues, often resulting in damage and dysfunction of the affected organs.
My Symptoms
When I was first diagnosed, I was experiencing a range of symptoms, including:.
- Swelling and stiffness in my fingers
- Raynaud’s phenomenon (discoloration of the fingers and toes due to poor circulation)
- Tightness and thickening of my skin
- Shortness of breath
- Acid reflux
- Fatigue
Over time, these symptoms have worsened, and I’ve experienced new ones, including joint pain, muscle weakness, and difficulty swallowing.
It’s been a challenging journey, but I’ve learned how to manage my symptoms and improve my quality of life.
Managing Scleroderma
There’s no cure for scleroderma, but there are ways to manage the symptoms and slow the progression of the disease. Here are some of the things that have helped me:.
Medication
I take a variety of medications to manage my symptoms, including immunosuppressants, proton pump inhibitors for acid reflux, and pain medications. It’s important to work closely with your doctor to find the right medications for you.
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Physical Therapy
Physical therapy can be helpful in managing joint pain and muscle weakness. My physical therapist has taught me how to stretch and strengthen my muscles to reduce pain and improve mobility.
Dietary Changes
I’ve noticed that certain foods can trigger my acid reflux, so I’ve made some dietary changes to reduce those triggers. I avoid spicy and acidic foods, and I eat smaller, more frequent meals throughout the day.
Stress Reduction
Stress can exacerbate the symptoms of scleroderma, so it’s important to find ways to manage stress. I’ve found meditation and yoga to be helpful in reducing my stress levels.
The Importance of Support
Living with scleroderma can be isolating, but it’s important to know that you’re not alone. Connecting with others who are also living with the disease can be incredibly helpful.
I’ve found support through online communities, in-person support groups, and my own family and friends.
Conclusion
Living with scleroderma has been a difficult journey, but it’s also taught me a lot about myself. I’ve learned how to manage my symptoms, how to reduce stress, and how to find support.
If you’re living with scleroderma, I encourage you to reach out to others who are also living with the disease. Together, we can navigate this journey and find hope for the future.
