My son has a disease called Von Hippel Landau and had his first surgery when he was in his early teen years, along with his older sister and younger sister. I've had 5 children 3 that have this genetic disease. VHL..org is our website and we do have a newsletter you can receive if a member of the John Hopkins Hospital in Maryland. My son was born in Sacramento California but moved up her to stay in Vancouver where he made his home. My son lived at the same address in the last year in Vancouver and our protocol was if he got sick from not taking his medication he would call the ambulance and go into VGH and call me, where he was usually dehydrated and hadnt eaten enough and not taken his meds. My son Paul's adrenal glands were first removed in his teen years then about 3 years he had pain where the adrenal glands were removed for 1 year and exactly 10 days till finally VGH found out he had a twisted bowel they did surgery right away (he could have died from this, plus the pain he was in). After this twisted bowel surgery he was the son I knew happy back to a normal so called life at 19. My son Paul had been to every hospital you name to found out about the twisted bowel surgery, cant believe then sent him away thinking he just wanted the medications for pain, which only helped for bit.. To see him get through this surgery and live for me now to tell it its beyond me. The pain was in the same area as the other surgery??? Process of elimination to take so long.
My son Paul graduated by taking English from Recovery Group in the Vancouver area. They were his support group where he made many friends to this day. Paul had been doing great but went in to see Doctor Scudamore the top specialist with our disease and found out he had another brain tumor and other issues. Paul had a intestine tumor which they removed end of November last year was successful and he went home. He got the flu and overlapped his medications still waiting for the toxicology report and a friend found him Boxing Day passed away. The ambulances and police were called by myself saying he was confused and couldn't do it himself but no one took him into the hospital knowing his address for calling him self at other times when he couldn't help himself. We are investigating this at this time. He been gone a month now. We all miss him and this did not have to happen. He was on Adrenal medication for life, like Addisons Disease without the meds he will die.