About me…..

UPDATED March 2017

I’m from a family which should be awarded the Darwinian Award because no one believes in this common genetic disorder. Dad had his hips replaced 3 times. EACH! When he died he explained he was aware of the iron disease but my sibling (a psychiatric geriatric nurse) advised him to “put it to rest”. He passed 1 month later. Mom has a brain filled with tangles and plaques. Dementia. She too (as far as I am aware of) has also not recieved any medical attention after I informed her of my diagnosis. I’ve got one brother who is not the bio dad of his only child. Our Dad said he “ain’t shooting”. That is a big HH symptom. TMI? Yup. The other bro (younger) had an MI at age 40. That happened because he drank too much. (According to the sis, the nurse.) He didnt drink too much. He probable drank more alcohol that anyone with even 1 HH gene should. Any alcohol is too much because our livers digest it differently. There is another sis. I cant share much because she is a bitch and I’m fairly certain she will rip my head off through the internet. Wait…this isn’t an anonymous blog? Oops. Then there is the sis who is a nurse. She is the same who according to our Dad decided Hereditary Hemochromatosis was not worth adding to his already large pile of health maladies. According to Dad she said it is a psychiatric disorder. I am making up the fact I am 100% disabled by the maladies caused by the HH genes I have. I really need to “GET HELP” according to the sis nurse RN. I have asked each of my specialists (there are 10 of them, my therapist, the real psychiatrist who refused to prescribe an antidepressant, mood stabilizer or any other psychotropic drug as well as a panel of HH specialists. NO! First you actually have a healthy dose of reality and those drugs will could only cause more problems than not when prescribes when not needed.

My sharing the truth about this common genetic disorder…and maybe I am a little bit crazy…. Try telling that to my therapist who  I visit weekly?  NO more drugs for you even though your sister said so!!

Did I mention the family expert of all medical advice is a nurse for the elderly in a psychiatric setting? She actually prescribes the mind clogging drugs to elderly patients. Many of who might just have Iron overload. It keeps the elderly in warehoused situations manable. (I read that somewhere on the web.) That makes a 3 year degree, a prescription pad and a huge studen loan to repay an expert of the 10 minute consult? . Maybe the herpes virus finally went to baby sissy’s brain? (I also read that on the web; untreated herpes infection can in later life infect the brain.)

I mean I’ve heard crazy relatives only want to inherit their crazy money and cut out their crazy sister from any inheritance because she might spend it like a crazy person? Wait that happens only in the in movies. (Shit!! Really??) I mean I’m not really saying this is the story here. I mean I’ve heard about families that learn too late and all die at a younger age because that crazy sister laughed too loudly………and wrote a book about it. Now that is crazy? Just saying.

*****This blog is my own opinion and words, photos are my story. Nothing can be reprinted or posted without giving proper credit. That is the law.******

(Here is the older version.)

I am a survivor of many things. Hereditary Hemochromatosis (Homozygous H63d) is when a genetic defect on a pair of genes already decided at conception. There are several genes discovered and more on the horizon. More and more primary care physicians are recognizing this disorder. Our healthcare system shoes not routinely test to see if one is loading iron. They test for too little iron, anemia, routinely. Its important to understand if you know (or even suspect ) a family member may be have Hemochromatosis you shouldn’t ignore it. It is also called the Celtic Curse because many with Celtic origins are at risk. I’ve always though I was the furthest from any Irish heritage. Both sets of my grandparents are from Canada. French Canadians. My father has generations of French Canadian relatives. While my Mother tracked her grandfather’s birth to a place now Northern Italy but formerly France. I don’t know if a technicality makes his heritage Italian or French. It doesn’t matter though. Anyone that has ancestors from northern Europe could possible have the Hemochromatosis genes. There are more facts and info about this disorder.

This is my story with HH. I was diagnose in 2008 at age 48 with this disease after years af failing health. As many who are storing iron I had lab test which were over or under the limits consistently. Not enough to draw more than a repeat test or an abdominal ultrasound. Finally after having bilateral carpal tunnel release procedures relieve the numb and tingling in my fingers but caused my thumbs to become frozen with arthritis. I ended up in the skilled hands of a Rheumatoid Arthritic specialist at the Brigham and Women’s Hospital in Boston through a series of elimination over several months ran the genetic test for Hemochromatosis. He had never had a test actually return positive. I was blindsided by a diagnosis which would change everything I thought I was. Healthy. It was routine to follow a genetic test with a liver biopsy. It was at that point that I found my I had been storing iron for years causing all the symptoms. I began treatment through weekly phlebotomy. After six months of weekly phlebotomies became biweekly followed by monthly.