I need my family/friends to understand and support me.
Posted , 4 users are following.
I just got diagnosed with HH after a year of intense symptoms. The depression, fatigue, joint pains, mental fog, irritability, no appetite, no sex drive and weight/hair loss is ruining my life and me. My family has no idea how debilitating all of this can be. I feel like my boyfriend and I need to go to counseling for his to better understand and be able to help me.
1 like, 5 replies
sheryl37154 mariamaurea
Posted
Contact your country's Haemochromatosis Association for information to be sent to you.
I empathise with you as none of my siblings and mother could be bothered to understand. They are all heterozygous and it is not affecting them. Now that I know the symptoms, my father would have been homozygous, but died without being diagnosed.
My husband is homozygous H63D (I am homozygous C282Y) and while he did iron overload, it was not enough to affect him. However, we have shared venesection times, but I think he forgets I have short days and cannot manage doing a lot. I used to be superwoman before this.
I had 9 years of severe symptoms after a hysterectomy before I was diagnosed. My dr was in denial, and as it was before google, I had no idea about it. I was staggering and slurring, my body full of pain, etc, etc, chest pains, arrythmia, and finally my hips broke up from having osteo necrosis. My blood was so thick with iron, it could not get into the fine capilliaries that feed the bone, so the bone died and broke up.
Apart from your venesections, and constant blood tests, have your vit B12 and D checked, as well as your hormones. HH is a hormone thief and you will never feel good unless they are in balance.
Keep asking questions, and educate yourself about it so that you know if you are getting the appropriate treatment. Always ask for a copy of your test resuls. I keep a spreadsheet to try to identify a picture of my progess. Write how you feel against your Iron Studies levels.
If you have problems with thick blood, try taking 100mg aspirin (low dose) every day. I found that made an extraordinary difference to how I felt.
allaroundanne mariamaurea
Posted
If you are in the US I'd say give up, they are never going to get it and HH is like an orphan disease over here. Most docs over here are still under the impression that the arthritis is due to iron overload, that's how poor our medical education is as regards HH. You will have to be your own source of information for yourself and your doctor if you are in the US. If you are in Great Britain, you have it made. I am sure you'd have no trouble finding a support group over there, there are none over here. I am in the US and am currently with a boyfriend who can't understand how debilitating the disease is. I thank my lucky stars we aren't married. There isn't any amount of counseling that would get him to understand HH. You have to grow up around people with it to truly understand.
sheryl37154 allaroundanne
Posted
Support groups are started by ordinary people who are frustrated by a lack of support, lack of sufficient knowledge by doctors and the need to create awareness of haemochromatosis.
Our Haemochromatosis association is manned by volunteers who work from their home, taking phone calls, providing what assistance they can, doing the administration that an organisation requires - financial, making sure all legal requirements are met, chasing grants to keep running, like providing booklets, pamphlets, phone bills, encouraging memberships, some travel far and wide to do public meetings to create awareness, and occasionally getting a nice donation which allowed 2 conferences to be held, lobbying politicians for awareness creation, fighting for genetic screening, information sent out to the medical profession, and a whole lot more. All done by volunteers.
I am 1500km from the nearest administrator. I was so fed up with the lack of knowledge and awareness, that I started a support group myself. The HA provided me with some pamphlets, booklets, posters, some pens, dvds, advertising on their website, letters sent out to members in the area who did not have email, a format for the sign in sheet, and I went from door to door of medical centres, pharmacies, blood banks, hospitals, cafes, shops, libraries, health stores, local council community centres, the various defence force facilities (they advertised in their newsletters), diabetes centres, you name it, with the help of my husband pushing me in a wheel chair (I had just had surgery on my leg and had to keep it elevated - I think that helped people say yes to me!).
I advertised in a free newspaper in their community news page, 'hired' for free a room at a local library, made use of the local community event websites, the local tv station takes info from the website to advertise community events - no outlay by me except for a couple of white board markers, and paper for things I printed off to hand out and my time of course.
22 people turned up first meeting. I could access the computer room to help people to use the computers to do HH surveys as they occurred. My husband's dr who was the most educated about HH turned up now and then to address the meeting and answer questions. After monthly meetings for 18 months, and lots of awareness displays at various expos and community events, getting pharmacies in on the act, I was sick of saying the word 'haemochromatosis', and too exhausted to continue. Fatigue caused by HH is still a big issue for me.
I would write up a report of each meeting going over what we discussed and send out to all those on my list, and print off some copies for those not on email.
At a local Seniors Expo, I must have spoken to at least 100 people about HH. There were some travellers who needed advice on where to go for a venesection in our city. I addressed service clubs - public speaking is my personal terror.
I got phone calls from people in town centres many kilometres away who had heard of what I was doing. Some would travel from afar to attend my group. I still get phone calls now and then, and am able to help people who feel they are not getting appropriate advice from their doctors, and I can tell them what to ask for, or give them names of doctors who know about HH.
I had hoped that the 'chair' and meeting arrangements could be shared by regular members, but none seemed up for the job, or address the meeting about something new they had learnt about HH. They were happy to share their experience.
... And a whole lot more.
So what I am saying is that it is 'easy' to start a Support Group
allaroundanne sheryl37154
Posted
Yes, but we are so few and far between here in the states there wouldn't be anybody to attend my support group. I actually live about 30 minutes from the national headquaters of our HH group and it is run out of someone's basement! Seriously. We need to import some HH immigrants and build up our HH population so we could have some people to populate the support groups LOL. It was truly frustrating as a physician to go to one of the number one medical centers in the US and be told that my arthritis and fatigue must all be fibromyalgia, did I ever think about meditating or acupuncture? I had to do an internet search on my own to discover that HH is associated with arthritis, I didn't learn it in med school, wasn't told it at my diagnosis and they didn't mention it as a possible explanation at my visit to the Cleveland Clinic for all my unexplained aches and pains. Imagine my surprise when I turned up all these papers, most of them from European medical journals all about HH arthritis. I have since become well educated about it and made it my mission to educate every other American doc I come in contact with! LOL I haven't done any public speaking yet-- that too is my personal terror, but I've taken on the education crusade in every other way. And I use forums like these as my support group.
sheryl37154 allaroundanne
Posted
One in 200 of caucasion people anywhere have haemochromatosis. Of those wih Irish heritage, it is one in 80. Recently, it has become obvious that Spanish and Portuguese people also have high numbers of haemochromatosis, not to forget those with northern European and Scandinavian heritage. Subsequently, there is a high incidence in Brazil. The next President of Haemochromatosis International is in Brazil.
It is NOT a Celtic thing. Ireland was populated by peoples from Iberia and the Mediterranean. 6000 year old bones of a woman in Ireland was found to have H63D and she had DNA from a place close to the middle east (having a HH memory moment). 5000 year old bones of 2 men in Ireland were found to have C282Y. There were not Celts. Celts were in France and they came down from the north from near either the Rhone or the Rhine (I forget which - the Rhine, I think). Some went westerly via what we call Germany, and some went south and crossed through Austria and Italy. They settled in Austria for hundreds of years and Austria does not have a high incidence of HH. It is believed they may have originated in the Scandinavian areas. They did not mass immigrate to Ireland, Scotland or Wales, England. Most went there when they were Romanised and went with the Roman armies).
So the US is full of it. I am sure the headquarters of HH near you can connect you with people in the local area, advertise in their newsletter, emails, facebook. You can just try with a gathering in a coffee shop at first to see what the interest is.
Those that don't have any symptoms often don't need to talk about it, but often I got people who had relatives with it or were concerned for their children. I was motivated by the damage done to me because of the 9 year delay of diagnosis after a hysterectomy, when my hips broke up from osteo-necrosis. So I wanted people to learn about it so that this did not happen to them. And yes, we need to educate the doctors, and even the haemotologists and the gastroenterologists (who are only interested if it affects the liver). So I am glad you are spreading the word to the doctors. Even dentists should know, as sometimes (as in my case), the thick ironed blood gets into the pulp of the teeth and turns the teeth grey.
From this forum it seems that it is not always diagnosed early in the UK. They don't test as a matter of course there either. On this forum, no one mentions support groups in the UK.