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Finding Strength in Vulnerability – A Rare Disease Day Reflection

Every experience in life serves a purpose. Living with Factor V Deficiency (Para-hemophilia), a rare bleeding disorder, has shaped my journey in ways I never… Continue reading Finding Strength in Vulnerability – A Rare Disease Day Reflection

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Türk Kahraman

39+5 de 3kg 700gr olarak bir erkek bebek doğdun. Doğumumdan 1 hafta sonra 10 gün küvezde kaldım üst solunum yolu enfeksiyonu geçirdim. 40 günlükken tanı… Continue reading Türk Kahraman

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(NDPH) Being 1 in 100,000

New Daily Persistent Headache has been the defining factor of my life since the day it started on July 24, 2016. It’s very similar to… Continue reading (NDPH) Being 1 in 100,000

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Türk Savaşçı

İsmimin hikayesiyle başlayım Emir Timur, Türk tarihinde çok büyük bir hükümdardı savaşçıydı ve bir ayağı engelliydi, İsmimi aldığım kişi gibi bende nadir bir savaşçı olarak… Continue reading Türk Savaşçı

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Surviving Tarsol Coalition My Journey Through Pain, Perseverance, and Strength

Surviving Tarsal Coalition: My Journey Through Pain, Perseverance, and StrengthFrom the outside, people often don’t see the battles I fight every single day. They don’t… Continue reading Surviving Tarsol Coalition My Journey Through Pain, Perseverance, and Strength

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22q11 and a podcaster

I was born with a congetial heart diease called tretlogy of fallout. I have had three open heart surgeies , two mouth surgeries. I was… Continue reading 22q11 and a podcaster

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Living with USP7 Hao Fountain Syndrome

As a young child born into a world at two weeks old, I was under a special light my early entrance signalled something not right.… Continue reading Living with USP7 Hao Fountain Syndrome

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The rollercoaster ride of events

I’m 27 and I have myoclonus dystonia and I was born with it but was diagnosed with it at the age of 20 in 2017… Continue reading The rollercoaster ride of events

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Addisons & EDS, More Than You Can Imagine

My name is Teresa. My journey to diagnosis was long. Too long. I couldn’t do everyday life. I had worked as a nurse, but the… Continue reading Addisons & EDS, More Than You Can Imagine

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