Share Your Story | Autoimmune Association

We Want to Hear Your Story!

Your voice is powerful. Your story is valuable. By sharing your experiences with autoimmune diseases, you have the opportunity to make a significant impact within our community and beyond.

Living with an autoimmune disease can often feel like navigating uncharted waters—daunting, complex, and filled with challenges. But remember, you are not alone.

Your story has the potential to alleviate the feelings of isolation and uncertainty that many individuals face on their autoimmune journey.

Your willingness to share your journey not only strengthens our community but also serves as a beacon of hope and inspiration for others.

Whether you're just beginning your journey or have been living with autoimmune disease for years, your story matters, and it has the power to unite us in solidarity and understanding.

Furthermore, by sharing your story, you contribute to the crucial task of raising awareness and bridging the diagnosis gap. Your experiences may help others recognize symptoms, seek timely medical attention, and see themselves reflected in your journey.

Join us in creating a space where BIPOC autoimmune stories are heard, valued, and celebrated. Together, we can empower one another, foster understanding, and advocate for change.

Name*

First NameLast Name

Email*

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Phone Number*

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Social Media Links

Address*

Street Address

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CityState / Province

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Race/Ethnicity (Check all that apply)

If other, please list below.

Disease(s)*

Please take us through your autoimmune journey, highlighting the key moments that have shaped your experience.*

eg. Initial Diagnosis, Treatment Milestones, Coping Strategies, Support Systems, Personal Growth, etc.

Upload a picture you feel comfortable sharing on our website/social media

Would you be open to sharing your story through a video that we could post on social media?*

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How old were you when you were first diagnosed with an autoimmune disease?

When did you first start experiencing symptoms?

What symptoms initially led you to seek medical attention?

Did you face any challenges in obtaining a diagnosis or proper medical care? If so, please describe.

How has your cultural background influenced your experiences with autoimmune disease, if at all?

Have you encountered any cultural beliefs or stigmas surrounding autoimmune diseases within your community?

How has your autoimmune condition impacted your daily life, including work, relationships, and mental health? What is your biggest challenge?

What coping mechanisms or strategies have you found helpful in managing your autoimmune condition? What has helped you navigate life better inspite of chronic illness?

Have you participated in any support groups or sought out resources specific to BIPOC individuals with autoimmune diseases?

Have you faced challenges accessing doctor-recommended diagnostic tests, medication, and/or treatments? Please select all that apply.

Insurance Denials: Insurance providers may deny coverage for certain diagnostic tests, medications, or treatments, leading to out-of-pocket expenses or barriers to accessing care.Prior Authorization Requirements: Some insurers require prior authorization from them before a doctor can prescribe certain medications or treatments, causing delays in receiving necessary care.Formulary Restrictions: Insurance companies often have formularies that limit coverage to specific medications, potentially restricting access to the most effective treatment options recommended by doctorStep Therapy Requirements: Insurers may enforce step therapy protocols, requiring patients to try and fail on less expensive medications before approving coverage for more costly options recommended by doctors.High Co-payments or Deductibles: High co-payments or deductibles for diagnostic tests, medications, or treatments can create financial barriers for patients, leading to delayed or forgone care.Lack of Access to Specialists: Limited access to specialists, particularly in certain geographical areas or within specific healthcare networks, may hinder patients from receiving timely diagnostic evaluations or specialized treatments.Other

If you checked a box for the above response, related to accessing healthcare, please share briefly how it has affected your health and overall well-being. Additionally, feel free to provide any other relevant examples of barriers you've encountered in accessing necessary medical care.

Do you feel adequately represented and supported within the healthcare system regarding your autoimmune condition(s)?

Have you experienced any disparities or inequalities in access to healthcare or treatment based on your race or ethnicity?

Is there anything else you would like to share about your autoimmune journey as a BIPOC individual?

In your opinion, what significance does it hold for the BIPOC autoimmune community to unite and advocate for health equity and cultural competence within the healthcare system?

What advice would you give someone who is struggling with an autoimmune disease(s)?

Terms and Conditions
In these Standard Terms and Conditions, "Your Submission" refers to any content such as audio, video, text, images, or other material you provide or display.

By submitting your content, you give The AIP BIPOC Network permission to use, reproduce, adapt, modify, publish, translate, and distribute it in our marketing materials and across all media channels. Your content must be original and must not violate any third-party rights.

By submitting content or information to The AIP BIPOC Network, you acknowledge that you are making it publicly available and associating it with yourself. The AIP BIPOC Network reserves the right to remove Your Submission at any time, without prior notice. We value your privacy. Within the limits of the aforementioned terms, The AIP BIPOC Network will never sell or disclose your personal information

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We Want to Hear Your Story!

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