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Jun. 24, 2022

TOPIC: Patient Stories

Giving Back to the Community: Suzy’s Rare Journey

Posted by Julie Ostroff
Suzy softly smiling in front of a blue background.

I am a rare disease patient who has lived with reflex sympathy dystrophy syndrome (RDS) and complex regional pain syndrome (CRPS) since 2007. In 2013, I was diagnosed with Ehlers-Danlos syndrome type IV, and in 2019, I had surgery for cholesteatoma. It is a benign auditory tumor that reoccurs 50% of the time. Life has been a challenge because I also live with gastroparesis, dysautonomia/POTS and a pacemaker. Despite all of this, I never give up.

This has definitely affected my life, but not how you might think. It has given me the chance to mentor others who live with pain and rare diseases. It has given me the opportunity to meet and help new people. Yes, the pain and difficulties can be exhausting, but the kindness and love that I’ve had the chance to give and receive have been an amazing part of my journey.

I am involved with awareness and advocacy. I enjoy helping others and in turn, this helps me. I get to meet awesome people and fight for the greater good. I try to use social media to raise awareness for my rare diseases.

I feel that the greatest challenge that we face is finding good healthcare from doctors and others in the healthcare industry. We are challenged because we are forced to be our own advocates. Some of us don’t look sick, although we truly are. It does not matter about your illness, gender or skin color. Pain is pain and it’s felt by all of us. We need to stand tall together to get what we need.