Which advice would you give to someone who has just been diagnosed with Adult-onset Stills Disease?

See some advice from people with experience in Adult-onset Stills Disease to people who have just been diagnosed with Adult-onset Stills Disease

Advice for Someone Diagnosed with Adult-onset Still's Disease

Receiving a diagnosis of Adult-onset Still's Disease (AOSD) can be overwhelming and raise many questions about managing your health and well-being. While it is important to consult with your healthcare provider for personalized advice, here are some general recommendations to consider:

1. Educate Yourself

Take the time to learn about AOSD, its symptoms, causes, and available treatment options. Understanding the disease will empower you to make informed decisions about your health and actively participate in your treatment plan.

2. Build a Support Network

Reach out to family, friends, and support groups to create a network of individuals who can provide emotional support and share experiences. Connecting with others who have AOSD can offer valuable insights and help you navigate the challenges of living with the condition.

3. Establish Open Communication with Your Healthcare Team

Develop a strong relationship with your healthcare provider, including rheumatologists and other specialists involved in your care. Regularly communicate your symptoms, concerns, and treatment preferences. Collaborate with them to create a personalized treatment plan that suits your needs.

4. Follow Your Treatment Plan

Adhere to the treatment plan prescribed by your healthcare provider. This may include medications to manage symptoms, reduce inflammation, and control disease activity. It is crucial to take medications as directed and attend follow-up appointments to monitor your progress.

5. Manage Symptoms

Work with your healthcare team to develop strategies for managing symptoms such as joint pain, fever, fatigue, and rash. They may recommend nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, or other medications to alleviate symptoms and improve your quality of life.

6. Prioritize Self-Care

Engage in self-care practices that promote overall well-being. This includes maintaining a balanced diet, getting regular exercise (as recommended by your healthcare provider), managing stress levels, and getting enough restful sleep. These lifestyle factors can positively impact your symptoms and overall health.

7. Monitor Your Health

Keep track of your symptoms, disease activity, and any potential side effects of medications. Regularly monitor your temperature, joint pain, and other relevant indicators. This information will help you and your healthcare provider assess the effectiveness of your treatment plan and make any necessary adjustments.

8. Stay Informed about Research and Clinical Trials

Stay updated on the latest advancements in AOSD research and clinical trials. New treatments and therapies may become available, and participating in clinical trials can contribute to the development of improved management strategies for AOSD.

9. Seek Emotional Support

Living with a chronic illness can take a toll on your emotional well-being. Consider seeking support from mental health professionals, therapists, or counselors who can help you navigate the emotional challenges associated with AOSD.

10. Stay Positive and Advocate for Yourself

While AOSD can present challenges, maintaining a positive mindset and advocating for yourself are essential. Stay proactive in managing your health, ask questions, and actively participate in decisions regarding your treatment. Remember that you are not alone, and with the right support and care, you can lead a fulfilling life.

Remember, this advice is not a substitute for professional medical guidance. Always consult with your healthcare provider for personalized recommendations based on your specific condition and needs.

Diseasemaps

Talk to family and friends, don't bottle up your emotions. Ask for help, you're going to need it, take it easy on yourself. Cry when you need to. I'd of asked for help sooner, I was used to being the strong, reliable member of my family and I tried to continue to be that, I still am strong mentally and emotionally but it's good to accept your physical limitations. Laugh and enjoy the small things in life, they become very important.

Posted Feb 25, 2019 by Terry 2550

Advocate for yourself. You know yourself better than any doctor ever can. If you feel something isn't right, or you aren't getting the treatment you need, speak up, or find another doctor who will listen and help. Try not to get so depressed about the change in your life that you become resigned to bring "sick " forever. You can help yourself get better if you just dont give up until you find something that works. Also, dont ever expect instant results - give the medicine time to start working before you give up on it.

Posted Sep 29, 2019 by Jenifer E 4550