Which advice would you give to someone who has just been diagnosed with Scleroderma?
See some advice from people with experience in Scleroderma to people who have just been diagnosed with Scleroderma
Scleroderma is a chronic autoimmune disease that affects the connective tissues in the body. If you have recently been diagnosed with this condition, it is understandable that you may be feeling overwhelmed and uncertain about what lies ahead. While every individual's experience with scleroderma is unique, there are some general pieces of advice that can help you navigate this journey and manage your condition effectively.
1. Educate Yourself: Knowledge is power when it comes to managing any chronic illness. Take the time to learn about scleroderma, its symptoms, progression, and available treatment options. Understanding your condition will empower you to make informed decisions about your health and treatment plan.
2. Build a Support Network: Surround yourself with a strong support system of family, friends, and healthcare professionals who can provide emotional support and guidance. Joining support groups or online communities specific to scleroderma can also connect you with others who share similar experiences and provide valuable insights.
3. Find a Knowledgeable Healthcare Team: Seek out healthcare professionals who specialize in scleroderma or autoimmune diseases. A rheumatologist, dermatologist, and pulmonologist are some of the specialists who may be involved in your care. Collaborating with a knowledgeable team will ensure you receive the best possible treatment and management strategies.
4. Communicate Openly with Your Doctors: Establish open and honest communication with your healthcare team. Share any concerns, symptoms, or changes in your condition promptly. This will enable your doctors to adjust your treatment plan accordingly and provide you with the necessary support.
5. Follow Your Treatment Plan: Adhering to your prescribed treatment plan is crucial in managing scleroderma. This may include medications to control symptoms, physical therapy, occupational therapy, or other interventions. Consistency and compliance with your treatment plan can help minimize symptoms and slow down disease progression.
6. Prioritize Self-Care: Taking care of yourself physically, mentally, and emotionally is essential. Get enough rest, eat a balanced diet, and engage in regular exercise as tolerated. Managing stress through relaxation techniques, such as meditation or yoga, can also be beneficial. Remember to listen to your body and pace yourself.
7. Protect Your Skin: Scleroderma can cause skin changes and increased sensitivity. Protect your skin from excessive sun exposure by wearing sunscreen, protective clothing, and avoiding direct sunlight during peak hours. Moisturize regularly to prevent dryness and cracking.
8. Monitor Your Symptoms: Keep track of any changes or new symptoms you experience. This will help you and your healthcare team identify patterns, triggers, or potential complications. Regularly monitoring your symptoms can aid in early intervention and prevent further complications.
9. Stay Positive and Seek Emotional Support: Living with a chronic illness can be emotionally challenging. It is important to maintain a positive mindset and seek emotional support when needed. Engage in activities that bring you joy, practice relaxation techniques, and consider therapy or counseling to help cope with any emotional difficulties.
10. Stay Informed about Research and Clinical Trials: Stay updated on the latest advancements in scleroderma research and clinical trials. New treatments and therapies are constantly being developed, and participating in clinical trials may provide you with access to innovative options.
11. Plan for the Future: While it is important to focus on the present, it is also wise to plan for the future. Discuss long-term care options, financial planning, and any necessary lifestyle adjustments with your loved ones. Having a plan in place can alleviate stress and ensure your needs are met.
Remember, every individual's journey with scleroderma is unique, and it is essential to work closely with your healthcare team to develop a personalized approach to managing your condition. By educating yourself, building a support network, and prioritizing self-care, you can lead a fulfilling life despite the challenges posed by scleroderma.
Posted Apr 1, 2017 by Fashah 1150
Posted Apr 1, 2017 by Milda 1000
Patients should also educate themselves from reliable sites such as the Scleroderma Foundation (slceroderma.org), the Scleroderma Education Project (SclerodermaInfo.org), the Mayo Clinic, and Johns Hopkins. As a general rule, they should avoid any sites that end with ".com" as they are usually sites that are trying to sell you something based on testimonials, but have little or no research support for whatever it is they are trying to sell you.
Posted Apr 4, 2017 by Choclit 1150
Posted Mar 30, 2018 by Amy 2600
Posted Nov 21, 2018 by Juanita 1900
Posted Feb 27, 2017 by cecilia miranda 1000
"don't worry about the disease, deal with it"
- Avoid the cold
- Avoid stress.
Posted Mar 21, 2017 by Amparo 1000
Posted Mar 23, 2017 by ana h 1400
Patience and a lot of strength to endure the changes that will give your life.
To maintain a specific diet and let food harmful.
Get plenty of rest.
In the case of labor, to take care of the work up to where the body allows it.
Find support on all sides, not only economic, but psychological, sentimental.
Enjoy the 1000 your life.
Posted Apr 28, 2017 by Alma Olivia 1000
And always remember to be a warrior as all the patients of scleroderma ...do not lose never the arms
Posted May 11, 2017 by Tatiana 1135
Posted May 15, 2017 by Lucero 1050
Posted May 18, 2017 by Montse 1151
The scleroderma has ups and downs.
Are many remedies and the various stages of the disease.
It's no use to despair. The important thing is to aptenser to live with it and how much before you become aware of the limitations that it causes.
Posted Sep 30, 2017 by Carol 1000
