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.
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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Awaiting Diagnosis
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. Read more »
Real Life Stories | TinaMiller | 
May 12, 2016 9:37 pm | 
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