Posts tagged: Diagnosis

Hannah’s Story and Diagnosis

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Hannah's Story


Hannah’s Story

My whole life, I thought I was the biggest wimp alive.  Until one day, when I was commiserating with my sister about how we have more aches and pains now that we’re in our 30s. I explained how much pain and fatigue I have each day, fully expecting her to say something along of the lines of “Yeah, me too!”

She didn’t.  Instead, she looked at me and said, “Wow. I couldn’t deal with that everyday.”

It was at that point I realized that maybe not everyone felt as bad as me all the time, and maybe I wasn’t just being weak and pathetic. I started asking other friends and family members about their pain levels each day and discovered that I had been wrong my entire life.

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The Bird Family’s Journey With E.D.S.

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The Bird Family’s Journey With E.D.S.

The Bird Family's Journey With E.D.S.

My name is Carrie, I am a 32 year old single mom to 2 beautiful special needs children, who have a few genetic medical conditions I passed down to them.

I started having major pain in my body around age 10, then began having copious amounts of charley horses in my teen years.

I tore ligaments, and broken many bones then started passing out when I was 14 or 15 years old.

I was told nothing was wrong with me and “to keep pushing on”, so I did.  I still played sports, even through all the excruciating pain, passing out and joint dislocations.

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Real Life Stories #4-Awaiting Diagnosis Marfan Syndrome

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Awaiting Diagnosis

Real Life Story #4 Rachel's Marfan Journey

Hi!  My name is Rachel.

I am 14 and a freshman in high school.

I enjoy designing clothes, reading books, hanging out with friends and watching movies.  I like creating stories and drawing.

I have been diagnosed with severe scoliosis, flat feet, severe vision issues, Ehlers Danlos Syndrome Type 3, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome.

I am currently awaiting gene testing results for Marfan Syndrome.Continue Reading the full Article…

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