Meet Mighty Model: Sarah Dame, Rare Disease Advocate and Ehlers Danlos Syndrome Warrior

Our Mighty Well Models all have direct, lived experience with chronic illness, either as a patient themselves or as a caregiver.

Today we’re excited to introduce you to Mighty Model Sarah Dame, a true advocate for the chronic illness community! You’ve likely seen her modeling our Mighty Pack over social, or on our website!

Here are a few highlights of our interview with Sarah…

I strive to see the good, and be real through the hard.

Can you tell us a bit about yourself?

Hi, I’m Sarah! I’m twenty three years old, a part time student, full time patient, and dog mom to my doodle, Welsley. 

I am fighting my illnesses every day and traveling across the east coast for appointments. I am an advocate for others facing medical injustice in the rare disease community. I love to write, travel, and send lots of cards out each week through my unofficial card ministry I call “Project Encourage”. When your sick, getting a card in the mail can turn around your whole day, so I try to bring that joy to others. 

What is your illness? When did you find out?

I have Ehlers Danlos Syndrome, a genetic disorder which affects my connective tissue, and the many co-morbibities that come with that diagnosis, along with Primary Immunodeficiency. My motility disorders cause me to have a feeding and cecostomy tube. It isn’t ideal, but I thank God for modern medicine keeping me alive.

I became very sick at age seven but until age 17 we never really got concrete answers. Thankfully we are now past the searching for answers stage and I am undergoing treatment for what I have.

Do you think your experience with illness has given you strength?

Without a doubt. You learn to push through the pain, find the good in the really hard circumstances, and you become a stronger person through all the advocating you do for yourself and others. 

It makes me a million times more thankful for “good” days, and empowers me to live each day to the fullest. 

After the last five years of pretty constant medical stuff it has inspired me to live differently. I strive to see the good, be real through the hard, and thank God for the very gift of each day- its given me a deeper appreciation for life. 

Thank you Sarah, for modeling for Mighty Well, being our constant Friend in the Fight, and for sharing your story of how you turned sickness into strength.

Do you want to learn more about ways you can get involved with Mighty Well? Join our Friends in the Fight Facebook Group to find community, volunteer opportunities, and helpful resources built empower you on your illness journey.

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