cavernous malformation
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Being Angry Is Easy. Giving Grace Is Difficult
Being angry is easy. Justifiable anger has fueled the lion’s share of my life. I…
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Mental Health, Rare Disease, and You: How To Change Your Mind.
Rare disease diagnoses generally come with mental health issues. Oftentimes, we see depression and anxiety…
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Struggling To Locate Resources For A Rare Brain Disease?
Why does it seem impossible to locate resources that we need to help us sustain…
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The Trauma of a New Symptom
New symptom trauma is a very real thing. I have had more than one conversation…
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Storytelling: Why You Should Tell Your Powerful Disease Story
Storytelling is an important part of rare disease. ‘Share Your Story’. But what does that…
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My Journey: Emily’s Tale of The Good and The BadÂ
By: Emily and Ian Johnstone Emily and Ian have written this story, with some minor…
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Grocery Shopping with HOD: A Survival Guide
Grocery shopping can be difficult for anyone, but especially for those with HOD and other…
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Self Reflection is an Important Part of Disability
By Chris Coates, HODA Founder and Board President I have been gainfully employed since I…
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Happy Birthday To Us All
By Chris Coates, HOD Founder and Board President I recently celebrated my 46th birthday. A lot…
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Medically Complicated Makes Everything Complicated
By: Christina Coates The other day, I received a call from a person that was…
