Welcome- we’re so excited you’ve decided to share your sarcoidosis story with us!
Thank you for your interest in sharing your story with us! Writing a blog post to share your experience with sarcoidosis is not only therapeutic for you, but also helpful for the hundreds of other patients and loved ones who will read it. There are so many commonalities between patients, but many suffer for years before meeting another person who knows the name of their disease, let alone someone else who is also battling this rare disease. By sharing your sarcoidosis story openly and honestly, you’ll validate the experience of other sarcoidosis warriors and help them realize they are not alone. Together we’ll continue to strengthen our community and raise much needed awareness for this devastating disease!
Everyone who submits a post to our blog has a different reason for writing, and a different story to share. You might want to write about raising awareness in your community, the importance of a strong support system, your experience in patient advocacy, or just share tips for other sarc warriors. Whatever story you want to tell, we ask that you do it in an honest and respectful way. If you’re worried that something you want to write might be controversial or not meet our guidelines below, email us and we’ll help you work through it!
Here are some guidelines we recommend sticking with to ensure your story gets approved for our website:
- For the most part, keep posts between 500-1000 words.
- Respect the privacy of others in your story. Don’t share details they have not given you permission to share.
- Keep a positive outlook in your story. While sarc warriors face their fair share of challenges, try to make this post an outlet for positive thinking and sharing good intentions. Make your goal to help or inspire others going through tough times.
- Use respectful language and try to avoid criticism of others.
- Please provide sources for any scientific or statistical facts that you include in your post.
- There is currently no accepted cure for sarcoidosis within the scientific community. Because of our commitment to providing patients with accurate and safe information, any references to therapies or protocols that claim to cure sarcoidosis with no scientific evidence will not be published.
Need help with a topic? Here’s some suggestions:
- Tips you’ve found helpful for reducing fatigue- have you found that adding stretching or exercise to your daily routine makes you feel better? Meditation? A change in diet or daily habits?
- What it’s like participating in a clinical trial- What did you expect? What surprised you? How did the process and follow-up work? Do you feel you impacted future research?
- How to grow a strong support system– Maybe you opened up and educated your family and friends on the disease, or started your own support group. Maybe you’ve found a support community by connecting with other sarc warriors online.
- What it’s like caring for a loved one with sarcoidosis- Being a caretaker to someone with a chronic illness can be extremely difficult. Share tips you’ve found helpful, or about your experiences watching a loved one battle this disease.
- Finding the power of your voice- Have you been involved in advocacy or other projects to make improvements for the rare community? Tell us about them.
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