TMA Story Submission Form

Calling All Patients, Care Partners, and Myositis Advocates!

Thank you for sharing your myositis story with us. Please use these prompts to help guide you in telling us about your journey. We will use your responses to draft an article for our TMA Patient Stories series, and we will share it with you before it is published. We may also use it for other outreach efforts, such as our quarterly magazine or social media.

The more fully you share the details, the more engaging your story will be. Of course, you can skip any questions that are not applicable to your story.

We are also willing to consider video stories for the Patient Stories series. Please contact Linda@myositis.org if you'd like to share your story in this way.

If you have questions or concerns, you may reach out to our Research and Communications Specialist Linda Kobert: Linda@myositis.org.

View previously published patient stories on our website.

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* 1. What is your first and last name?

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* 2. What is your email address?

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* 3. Please select one.

I am a person diagnosed with myositis

I am a care partner of someone diagnosed with myositis

Other

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* 4. Which diagnosis affects you or your loved one? Check all that apply.

Antisynthetase syndrome (ASyS)

Amyopathic dermatomyositis (clinically amyopathic dermatomyositis, CADM)

Dermatomyositis (DM)

Inclusion body myositis (IBM)

Interstitial lung disease (ILD)/Fibrotic lung disease

Juvenile myositis (JM)

Anti-melanoma differentiation-associated gene 5 (MDA5)

Necrotizing myopathy (NM, NAM, IMNM)

Polymyositis (PM)

Valosin containing protein (VCP) gene disease, GNE myopathy, or related

Overlap myositis

Not yet diagnosed

Other

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* 5. Do you live outside of the United States?

Yes

If yes, please list country here.

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* 6. What is a fun fact about you, that has nothing to do with myositis?

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* 7. What was you or your loved one's first myositis symptom?

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* 8. How long did it take to receive an accurate diagnosis?

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* 9. How has myositis affected your life?

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* 10. How has your family/community supported you on your myositis journey?

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* 11. How does your care team of doctors, specialists, infusion providers, etc. help to manage this disease?

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* 12. What is one thing you wish every medical student knew about myositis, before they entered practice as a physician?

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* 13. How has TMA been helpful to you and your family?

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* 14. Describe how you have advocated for the myositis community, and for all those on a rare medical journey. Have you requested a proclamation, joined Rare Disease Day observances, or met with your legislators?

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* 15. What is your most useful hint, hack, or tip for navigating daily life with myositis? Do you have a specific self-care practice or resource that you recommend to others?

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* 16. What words of encouragement do you want to share with others on a journey with myositis?

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* 17. We need three pictures of you for your submission to be complete. They do not need to be professional pictures. Please upload the first picture here.

PDF, DOC, DOCX, PNG, JPG, JPEG, GIF file types only.

Choose File

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* 18. Please upload your second picture here.

PDF, DOC, DOCX, PNG, JPG, JPEG, GIF file types only.

Choose File

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* 19. Please upload your third picture here.

PDF, DOC, DOCX, PNG, JPG, JPEG, GIF file types only.

Choose File

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* 20. Are you currently a TMA member? You can activate your no-cost membership on our website at https://www.myositis.org/join-tma/.

Yes

No, but I will join soon!

Not sure