Life in a Body Slowly Turning To Bone: Kathleen’s Story

Kathleen Degenhardt lives with fibrodysplasia ossificans progressiva (FOP), an ultra-rare connective tissue disorder that turns muscle, tendons, and ligaments to bone.

For Kathleen, treatment innovation and a tight-knit support community have been instrumental to her living a good life with FOP. Now, Kathleen shares her story in hopes of increasing awareness of the telltale symptoms of this rare disease, and as a means of combatting the isolation of being "rare."

[anitaenslow]

You are very Inspiring! My mom who is 84 has fought all her life to stay alive, she has a rare disease called fibrous dysplasia. Her bones in her head on the right side turns to fibrous tissue. Her life expectancy was only 25 years old and she is going to turn 85 in October and has had 8 children! She has been my hero and inspiration all my life. I love to hear about other peoples stories of fighting a rare disease and staying so positive! ❤️

[carolannmiller]

Such an amazing woman w/ an unstoppable attitude and an inspiration to ALL! What an amazing family too!

[emilynicole]

My best friend had this condition. She died at 26. I miss you Stephanie. Fly high angel.

[horseygran]

Sending our best wishes from our family in Australia to your family and friends. I have terminal brain cancer so understand a little of the issues you are experiencing. Thank you for your words of encouragement for sick people. Helps so much.

[judithwerner]

She is so courageous. I feel humbled.

[icare]

What beautiful energy this young woman has ❤

[fritztheman]

I'm 66 years old. I've met a lot of people and have had a lot of life experiences. What a joy this woman is. Kathleen lights up the dark spaces in life.

[julesoxana]

She is amazing❤ Praying we find a cure for FOP and all chronic and terminal illnesses soon and that it never takes away her smile❤ God bless her and all her families, friends and loved ones✝️🙏❤️

[greasylimpet]

What a wonderful attitude you've got. Instead of moaning about your lot, you're enjoying everything as much as you can.
Best wishes from Australia ❤

[lj]

Wonderful story of an amazing young woman. I admire her attitude and knowledge. ❤️🌷

[JerrySirgio]

She is so courageous. I feel humbled.. Kathleen's optimism is so heartwarming and encouraging!.

[Adriana-xj]

You are an inspiration to everyone. God bless you and your beautiful family.🙏🏽

[Cil]

Dear Kathleen, sending you lots of love! 🙏❤️

[ramonitaboisclair]

What an inspiration you are to me, I live with chronic pain 24/7, but is nothing compared to your situation. I had 16 surgeries and I’m in agonizing pain, a lot of the surgeries went very wrong but like I said, you motivate me to get out of bed.I’m from Massachusetts and I hate the winters bc the pain is worse.GOD bless you and all your loved ❤❤ ones.🙏🙏🙏🙏🙏🙏

[puffs]

So heartwarming to realize her greatest care is making life easier for other FOP patients. Her parent's are the epitome of love, strength, and support. No wonder this young lady is so amazing! I immediately gave thanks to my Father for my capabilities.

[lindazuba]

God bless you every second of every day. All of you.❤

[madeleine]

Kathleen is a sweetheart! I wish her and her family the very best!

[ruziezie]

Wish you all the best Kathleen. You are not alone.. 🙏

[elizabethmerrick]

Kathleen is so positive in her outlook on life considering her debilitating condition. I wish her happiness for the future. ❤

[katvos]

Up until just recently, I'd go through Goodsoil every summer to go camping. Who knew that such an inspiring individual was so close by! Wishing you all the best, Kathleen, as you continue to bring awareness about FOP.