An amazing journey that saved my life

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My story may be quite different than most.  I was adopted when I was 4 months old.  Growing up, I didn't gain weight, had pain with my feet and legs, and started wearing glasses at age 8.  My adoptive parents took me to doctors all my life.  The doctors would say I had a high metabolism and growing pains.  When I went to school, the teachers thought my adoptive parents weren't feeding me because I only weighed 15 lbs in kindergarten.  I wore braces from my knees down to correct my flat feet but that didn't work.  I wore special shoes with arch support to try to alleviate the pain but that didn't work either.

In 1984, I decided to marry and wanted to find out about my medical history.  I enlisted the help of my congressman to have my adoption records unsealed.  In Kentucky, adoption records were sealed never to be opened so the adoptee could never know their birth parents.  My adoptive mother and I went to the Governor's office and pled my case.  The governor made a law that any adoptee over the age of 18 could have their medical records.  Once I got my medical records, I read that my birth family had flat feet, allergies, and mostly basic information.  No mention of Marfan Syndrome.

I spent the next 23 years trying to find any information.  There were many people who helped me but the one who helped me the most was my oldest birth brother's ex-wife.  She found a posting while looking for a family member and she got me in contact with my oldest birth brother.  I met him, my other brothers and my mother in 2007.

My oldest birth brother told me he had been diagnosed with Marfan Syndrome in 1977 during his physical to go into the Navy.  He told me he had died twice because his lungs blew a hole in them.  It took 2 xrays just to get a chest xray because his lungs went past his ribcage.  He had an aneurysm on his aorta that was 4.2 cm.  He was double jointed just like me and just as flat footed.  He told me that many of my birth aunts and uncles had died from aneurysms and that seemed to run in the family.  Since I'd never heard of Marfan Syndrome, I never thought I had it.

In 2011, my right arm and shoulder kept tingling and I suffered with it for about a year.  I just thought that I had pinched a nerve picking up computer equipment.  I finally went to the doctor and he thought I had carpal tunnel and sent me for a test.  I never mentioned Marfan syndrome to my doctor because I thought it was only my birth mother and brother.  When I went for my carpel tunnel test, the doctor administering the test looked at me and said, "And you have Marfan Syndrome, is that correct?".  I was stunned!!  I really didn't know what to say.  I began telling him about my birth family and my brother.  He did the clinically testing on me.  Yes, my wingspan was longer than my height, my teeth crowded, and I could overlap my thumb and pinky finger around my wrist.  He told me it was very important that I tell my doctor and get tested.

If I had never searched for my birth records, I'd never would have found my birth brother.  Because he was diagnosed in 1977 and I was adopted in 1964, the records didn't have anything about Marfan Syndrome.  If my doctor had not sent me for a carpal tunnel test and my testing doctor did not know about Marfan Syndrome, I would never know what I do now.  My journey was long and hard at times and I nearly gave up several times.  This amazing journey did save my life and now I take care of myself and have a team of doctors who are learning with me.  I am raising awareness so others like me will get tested.  Knowing the signs can save a life.  Keep fighting for victory!!