My name is Heather and I am writing from Tampa Bay, Florida. I ran across your website this morning after speaking with my mom about Jason, my brother.
To give you the condensed version, my brother is 25 years old and has the mind of about a seventeen year old. He is a wonderful, bright man, but has gone through some very rough things. As a child he went to school for children who were learning disabled. Even in Junior High School a teacher called him "stupid".
He saw specialists, shrinks, etc. and my parents were really never told anything specific. At some point, Jason took a fall down a flight of stairs. We were both very small at the time, but I do believe he hit his head.
Flash forward more than a decade and Jason ended up using drugs and in jail on several occasions. One occasion his lung slightly collapsed while he was out (I am not sure if this was caused by drugs or drinking, but it was completely spontaneous.) He beat someone to the point where the man lost consciousness and finally got put into boot camp. After a failed attempt at boot camp and 4 more months in jail, the judge gave him one last chance to go through boot camp.
My mother has never given up. Through the frustration and through my father's horrible attitude (he is my dad, I love him, but the truth is he has never been a good father to Jason) she continued to strive for an answer.
After searching the house, she came across some old records describing two sets of results: Connective Tissue Disorder and an Arachnoid Cyst on the brain. I am shocked. And I am so thankful for your website.
I have had three forms of cancer (A lymphoma, cervical cancer and a type of leukemia)and after reading Elizabeth's story it made me wonder if somehow something really could have been passed to us from the womb? My sister, to this day has remained healthy though her three pregnancies were awful, all requiring hospitalization.
Jason has just enrolled in collage and earned his GED at the age of 23. Everything is so overwhelming for him. His self-esteem is so low and he has no knowledge of this disorder. He is now busing tables at a restaurant and has no health insurance. They have asked him if he'd like to try being a waiter but the mere thought terrifies him.
A large lump has developed on the back of his neck. This is not silimar to the lump I had before being diagnosed with Lymphoma, but knowing that he has an arachnoid cyst and that it has something to do with spinal fluid I am greatly concerned. Please forgive my ignorance, I know you are not a doctor, but I was wondering if you had any recommendations on what to do. I am willing to pay out of my pocket to take him to a physician. I am just not sure what kind of doctor to take him to. Jason is in Miami, Florida as is the rest of my family, but I will do what it takes. I am not sure whether to start with a neurologist or General Practioner, but any feedback you have would be appreciated.
These test results are probably 20 years old, and I am horrified,angry and disturbed that there is not one, but two doctorsout there whodid not educate my parents (mom) as to what was going on. Mymom is so hurtand feels so guilty over this. My brother has been robbed ofso much time. This condition may not get better, but at 25he willnow learnto dealwith something he could have been somewhat educated on from an earlier start.
Thank you in advance. I apologize for the long-windedness. I will keep checking your website too.
I look forward to hearing from you.