Scleroderma: A Journey Through Skin Challenges

Q: Scleroderma: A Journey Through Skin Challenges

Hello： In response to your question, I am very sorry and saddened to hear this news. <br>Regardless of the many ways you have sought treatment, please do not lose hope. <br>I am currently seeing patients at Taoyuan Hospital, but I only see patients once a week on Wednesdays. <br>

I hope this is still just a skin issue?

Director Jiang: Hello.
Over seven years ago, you passionately treated my young daughter at Taoyuan Hospital, and both my family and I are deeply grateful.
However, time cannot be reversed.
The lively and lovely little girl (I wonder if you still remember: you diagnosed her with the serious condition of scleroderma during her first visit and even gifted her with skincare lotion) is now eighteen years old.
She should have blossomed into a graceful young woman, but unfortunately, fate has been unkind.
Her scleroderma remains untreated and has progressed to the stage of contractures, and she now relies on a wheelchair for mobility.
Her skin remains smooth and tight, and her joints are prone to injuries.
Fortunately, examinations of other organs have shown normal results.
Perhaps you may still suggest that we seek care from other specialties, but we have already tried many options without success.
We now have no choice but to focus on the body's regulatory systems related to the skin.
I hope you can provide guidance or assistance to help alleviate my daughter's suffering.
Thank you once again, and I wish you good health.

Gu, 50~59 year old female. Ask Date: 2007/05/01

Dr. Jiang Yujiao reply Dermatology

Hello: In response to your question, I am very sorry and saddened to hear this news.
Regardless of the many ways you have sought treatment, please do not lose hope.
I am currently seeing patients at Taoyuan Hospital, but I only see patients once a week on Wednesdays.
I hope to have the opportunity to help you.
There are still pharmacological treatments available for scleroderma, so you should not give up on treatment.

Reply Date: 2007/05/01

More Info

Scleroderma, also known as systemic sclerosis, is a chronic autoimmune disease characterized by the hardening and tightening of the skin and connective tissues. It can affect various parts of the body, including the skin, blood vessels, and internal organs. The condition can lead to significant challenges, particularly when it progresses to the point of causing joint contractures and mobility issues, as you have described in your daughter's case.

The journey through scleroderma is often fraught with difficulties, both physically and emotionally. The skin manifestations of scleroderma can include thickening, tightening, and a shiny appearance, which can be distressing for patients, especially young individuals. The fact that your daughter is now reliant on a wheelchair indicates that the disease has progressed to a severe stage, which can be particularly challenging for her quality of life.

While there is currently no cure for scleroderma, management strategies focus on alleviating symptoms and preventing complications. This often involves a multidisciplinary approach, including dermatologists, rheumatologists, physical therapists, and occupational therapists. Each specialist can contribute to a comprehensive care plan tailored to your daughter's needs.

1. Skin Care: Regular moisturizing is crucial for patients with scleroderma to help manage dryness and maintain skin elasticity. Emollients and occlusive agents can be beneficial. It’s important to apply these moisturizers frequently, especially after bathing, to lock in moisture.

2. Physical Therapy: Engaging in physical therapy can help maintain joint mobility and prevent contractures. Stretching exercises and range-of-motion activities are essential to keep the joints flexible and reduce stiffness.

3. Pain Management: If your daughter experiences pain, it may be beneficial to consult with a pain management specialist. Medications, physical therapy, and alternative therapies such as acupuncture may provide relief.

4. Monitoring Internal Organ Function: Since scleroderma can affect internal organs, regular monitoring through imaging and laboratory tests is essential. This helps in early detection of any complications, such as pulmonary hypertension or gastrointestinal issues.

5. Emotional Support: The psychological impact of living with a chronic illness should not be underestimated. Support groups, counseling, and therapy can provide emotional relief and help your daughter cope with the challenges of her condition.

6. Research and Clinical Trials: As scleroderma is an area of active research, it may be worthwhile to inquire about clinical trials that your daughter might qualify for. New treatments are continually being developed, and participating in a trial may provide access to cutting-edge therapies.

7. Lifestyle Modifications: Encouraging a healthy lifestyle, including a balanced diet, regular exercise (as tolerated), and avoiding smoking, can help improve overall health and potentially slow disease progression.

In conclusion, while scleroderma presents significant challenges, a comprehensive management plan can help improve your daughter's quality of life. It is essential to work closely with her healthcare team to address her specific needs and adapt her treatment plan as her condition evolves. Your dedication to seeking help and understanding the complexities of her illness is commendable, and I encourage you to continue advocating for her care.

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