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31 years fighting this disease. Life goes on.

LostOne Message
6 Feb 2011, 05:41 AM

Hi all, Havent told my story much and I think its time. At age 10 i was diagnosed with panhypopat. also Human growth hormone defencency and Hypo Thyroidism. Took real growth hormone shots, cortozone and synthriod. I was only 1 of 5000 people in usa that had it and 3 years later i broke world record growing 16 inches in 1 year. At age 16 There were bad batch of hgh's and people were getting a form of krydsfelt jakob disease and they stoped producing it. They said incubation period could be up to 20 years so untill i hit 36 years old i was always woried now and then if i would get it. At age 21 My body was growing immune to the meds. They were giving me migranes and it was time to stop taking it unless my levels went dangerously low. People with this disease take longer to heal. When sick it always took me longer to feel better. From 1992 to presnt i went through many jobs. I was always the great fast worker but to sick to much.. In 2008 My body collapsed. Was not generating enough electrolytes and energy crashed to an all time low. I became the first known person ever To File for Social Security Disability with this condition and it was a fight. After 3 years I won that fight and now am on SSD. To all the people behind me now 50,000 people in usa. Younger then me, I have a message for you. I understand your pain. I understand the lack of energy and geting sick easy and what it takes out of you. Just never give up hope that some day they will actually look into researching this disease and fight it . Always have hope.
nancypat Message
6 Feb 2011, 02:00 PM

Hi Lost One-- What a great story. I have also been living with Panhypopituitarism since I was 10 days old which was 31 years ago. I don't call it a disease I call it a condition because we don't suffer like people with Cancer or other diseases. We can live a healthy normal life all we have to do is take some medication on a daily basis. That's it. They haven't found a way to put a new pituitary gland in our system. That's really the only thing that is wrong with all of us. Which they can't because that's a very sensitive area of the brain and we'll never get that chance, and if I was told they found a way for it all to go away I wouldn't take that chance. I went through a similar situation like you did last year. I thought I was immune to the medication and I was essentially healed. Boy was I wrong. I was getting migraines and having many other problems. Slow heart beat constipation etc,,, I completely got off my Synthroid, Cortisone, and other medications and Said I don't need this! 3 months later I was at my house and half dead on the ground in my living room. Thank God that my cousin found me or I would've been dead, If you were getting migraines and all that you were probably on too much. Have your doctor check your levels and enjoy your life with Panhypopituitarism. Feel free to email me at I'd be more than happy to talk to you more :)
kissimmee7 Message
29 Aug 2011, 03:44 PM

hello, im 26 been off my hormones for 9 years because of insurance reasons and money. i though i felt fine and normal until i did some research. all the side affects are all scares me. now im going to see a specialist next month in orlando. my life will change for the better. my mother told me that i dont know what life is when you cant live it! maybe oneday my life will turn on.