Living with Scleroderma. How to live with Scleroderma?

Can you be happy living with Scleroderma? What do you have to do to be happy with Scleroderma? Living with Scleroderma can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Scleroderma


Living with Scleroderma


Scleroderma is a chronic autoimmune disease that affects the connective tissues in the body. It is characterized by the hardening and tightening of the skin and can also affect internal organs. Living with scleroderma can be challenging, but with the right strategies and support, it is possible to manage the symptoms and lead a fulfilling life.



1. Educate Yourself


One of the most important steps in living with scleroderma is to educate yourself about the condition. Understand the symptoms, potential complications, and available treatment options. This knowledge will empower you to make informed decisions about your health and actively participate in your treatment plan.



2. Build a Support Network


Living with scleroderma can be emotionally and physically challenging. It is crucial to build a strong support network of family, friends, and healthcare professionals who understand your condition and can provide the necessary support. Joining support groups or online communities can also connect you with others who are going through similar experiences.



3. Follow a Healthy Lifestyle


Adopting a healthy lifestyle can help manage the symptoms of scleroderma. Eat a balanced diet rich in fruits, vegetables, whole grains, and lean proteins. Stay hydrated and limit your intake of processed foods, sugary drinks, and alcohol. Regular exercise, as recommended by your healthcare provider, can improve flexibility, circulation, and overall well-being.



4. Protect Your Skin


As scleroderma often affects the skin, it is essential to take extra care of it. Protect your skin from excessive sun exposure by wearing sunscreen, protective clothing, and hats. Keep your skin moisturized to prevent dryness and cracking. Avoid harsh soaps and opt for gentle, fragrance-free products.



5. Manage Stress


Stress can worsen scleroderma symptoms, so it is important to find effective ways to manage it. Engage in relaxation techniques such as deep breathing, meditation, or yoga. Prioritize self-care activities that bring you joy and help you unwind. Consider seeking professional help if you are struggling with stress or anxiety.



6. Regular Medical Check-ups


Regular medical check-ups are crucial for monitoring the progression of scleroderma and managing any potential complications. Stay in close contact with your healthcare team and attend scheduled appointments. Be proactive in discussing any new symptoms or concerns that arise.



7. Medication and Treatment


Depending on the severity of your symptoms, your healthcare provider may prescribe medications to manage pain, inflammation, or other specific symptoms. It is important to take your medications as prescribed and communicate any side effects or concerns to your doctor. Additionally, explore alternative therapies such as physical therapy or occupational therapy, which can help improve mobility and quality of life.



8. Plan for the Future


Scleroderma is a chronic condition, and it is important to plan for the future. Consider discussing advanced directives, such as living wills or power of attorney, with your loved ones. Financial planning and disability benefits may also be necessary to ensure you have the necessary support in the long term.



9. Stay Positive


Living with scleroderma can be challenging, but maintaining a positive mindset can make a significant difference. Surround yourself with positivity, engage in activities you enjoy, and celebrate small victories along the way. Remember that you are not alone, and there is support available to help you navigate this journey.



Living with scleroderma requires a holistic approach that addresses both the physical and emotional aspects of the condition. By educating yourself, building a support network, adopting a healthy lifestyle, and following medical advice, you can effectively manage the symptoms and live a fulfilling life.


by Diseasemaps

Just be optimistic and hopeful. Be with people who understands your situation, I know its a rare disease and people do not know about it still, so our role is to educate them that we have this disease but we are living happily with it

4/1/17 by Fashah 1150

It is all in the mind... think positive, stay positive. It is not easy. Accept your limitations and work around it. It also helps to share your feelings... don't keep quiet about your condition.

4/1/17 by Milda 1000

Systemic scleroderma is a life changing experience for anyone. It often puts major stress on marriages as it is often has many "invisible" symptoms such as pain and fatigue. Many patients are finding that joining one or more support groups, both online and locally (where available) is a wonderful way to connect with others and get tips but also to help others by giving support and providing information about their own experiences with drugs or ealing with specific symptoms. In my case, I made the unusual journey from being diagnosed in 1990 to now becoming an educator and published researcher. I also spend a couple of hours a day helping others, which I find very satisfying.

4/4/17 by Choclit 1150

To live with Scleroderma just take one day at a time. Enjoy your good/great days and try to brush off the not so great days! Stay in tune with your body and see your doctors regularly. I believe positivity is the key!

3/30/18 by Amy 2600

I've lived with Scleroderma for sixteen years. I am thankful for all that I am able to do even though I am limited at times. I read a perfect strategy for those with Scleroderma: "I have Scleroderma, it doesn't have me!" I keep that in my head when I feel down. Life is worth living and it is a mantra for me. Live each day with the gifts you have. If you cannot get out of bed: use the time to read and grow; visit others on the Internet; join an advocacy group; help those worse off than you. Consider what you 'can' do.

11/21/18 by Juanita 1900
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It lives not have to. He is not happy. You can never be happy because your body will never be 100 x 100

2/24/17 by . Translated
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assume that it is a disease character of chronic and irrecoverable, that there are measures to prevent some of the symptoms and the situation of evolution depends on each case so that they serve also join support groups and to change life style

2/27/17 by cecilia miranda. Translated
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You can live, but bearing in mind the limitation of each. You have to be positive to try to be happy

3/21/17 by Amparo. Translated
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To be happy with scleroderma should only be to accept the disease consume foods and healthy beverages, go to the right specialist and to remain emotionally balanced

3/23/17 by ana h. Translated
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The most difficult question to answer. Yes you can be happy, but sometimes that is impossible. The pain that a patient feels daily, and the face of a society that for all it limits, judges, and discriminates, I think those factors would take away happiness to your life. It is very difficult to give an answer.

4/28/17 by Alma Olivia. Translated
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Follow it to the letter with the treatment , try to be as relaxed as possible to learn to control nerves and accepted connla disease , assume that you have this disease and you will have all ur life , therefore, is not alone these with it , or do you do of your illness, your friend and follow the doctor's advice your life will be more easy. And everyone can be happy happiness is a matter of attitude not of a disease .......

5/11/17 by Tatiana. Translated
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The main thing is to accept it, not fight it, remember that it is something that our own body produces, that is why it is autoimmune, then do not fight against yourselves. When we accept it we can begin to understand and be happy again. The time is short and life difficult to enjoy what we have left

5/15/17 by Lucero. Translated
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Yes. In spite of the pain. Live each day and enjoy all the moments.

9/30/17 by Carol. Translated

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