Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
This is probably a huge step out on my behalf, but here goes...
I have a "hunch" about something, and I'd like to ask a few short questions of you. If you don't feel comfortable I completely understand. And if you want just shoot me a message. I'm not going to take down names because honestly I just want the raw data.
1) Do you have any illness that seems to run in the family? This could be anything from ADHD or a mental illness, diabetes, a certain cancer, arthritis, Alzheimer's etc.
2) Do you suffer from "memory fog" now or have you in the past?
3) Did you grow up in the city, the suburbs, or out in the country?
4) Were you ever the "outdoors type" as a child or adult (did you play in fields or tromp through the woods)?
5) Do you or did you ever regularly consume alcohol?
6) What was your first symptom?
Bonus Question (pressing my luck):
Do you know anything about your ancestry? I'm a bit of an ancestry buff. This can be anything from your race or where your family is originally from generations back to your GGGGG grandfather's name from Iceland.
If I can gather enough data I'd like to hand it over to someone like the the American Hemochromatosis Society.
I swear I'm not trying to be nosey. I want to see if we can nail down a triggering mechanism. And to be quite honest, many of us are likely related anyway. It is a genetic disorder. Thanks!
*prays for responses but is probably being asking too much*
I have a "hunch" about something, and I'd like to ask a few short questions of you. If you don't feel comfortable I completely understand. And if you want just shoot me a message. I'm not going to take down names because honestly I just want the raw data.
1) Do you have any illness that seems to run in the family? This could be anything from ADHD or a mental illness, diabetes, a certain cancer, arthritis, Alzheimer's etc.
2) Do you suffer from "memory fog" now or have you in the past?
3) Did you grow up in the city, the suburbs, or out in the country?
4) Were you ever the "outdoors type" as a child or adult (did you play in fields or tromp through the woods)?
5) Do you or did you ever regularly consume alcohol?
6) What was your first symptom?
Bonus Question (pressing my luck):
Do you know anything about your ancestry? I'm a bit of an ancestry buff. This can be anything from your race or where your family is originally from generations back to your GGGGG grandfather's name from Iceland.
If I can gather enough data I'd like to hand it over to someone like the the American Hemochromatosis Society.
I swear I'm not trying to be nosey. I want to see if we can nail down a triggering mechanism. And to be quite honest, many of us are likely related anyway. It is a genetic disorder. Thanks!
*prays for responses but is probably being asking too much*
2) Occasional episodes of short-term memory loss
3) Grew up in suburbs
4) Not much outdoor activity
5) Occasional alcohol use until diagnosed with HH at age 40
6) First symptom?(in retrospect) was severe hand pain/arthritis; major symptoms that prompted doctor visit were severe hair loss, severe fatigue, and many types of nervous system issues (e.g., trembling leg, heart arrhythmia, ringing in ears, feeling like cold molasses was being poured on my head)
Each of my parents is approx. half potato famine Irish and half Scotland-origin indentured colonial servant. The remaining fraction of the ancestry is mostly unknown.
"We thought that we had the answers, it was the questions we had wrong." - Bono
Hmmm...
1 out of 100-300 has HFE mutation homozygosity.
1% to 50% of those develop HH.
So let's say 1 out 200 people have both copies. And let's assume that roughly 1/4th of these people will end up with HH. If there is an external trigger, then EVERYONE here has something in common.
I'm wondering what happens to us at age 20-30 that begins the process. At age 30 people begin to lose calcium. Calcium inhibits iron intake.
?
Much thought needed. Must meditate.
2) Yes
3) Half&half, if you call a town of less than 10,000 a city. lol
4) Always outdoors, even as a teenager
5)Yes, starting at about 19 I drank quiet a bit on the weekends. Parties at the lake, playing in a band, football season, always a reason to have a drink in my hand. My Gastroenterologist (this was at the age of 48) told me I needed to completely avoid it to be on the safe side. I've felt much better since I completely quit and after about six weeks of no alcohol I began to feel as if I had never drank at all.
6) The first symptom was bronzing of my skin above the ankles on the back side of my legs. Since I had been out fishing and soaking up the sun, I ignored it.
Flash forward 4 years and pain in my right side sent me to my doctor. The rest, as they say, is history.
2.) Total memory fog. All the time.
3.) Burbs
4.) Family was not the out-doorsy types but I loved to ride my bike as a kid.
5.) Drank regularly before diagnosis
6.) Stomach pain
Bonus ? ;) Irish, german & sweedish
2: Yes, often have memory fog
3: suburbs/country
4: Yes, I was the outdoor type
5: Yes, I did consume alcohol up until 10 yrs ago (I have been diagnosed 22yrs)
6: First symptom= joint pain
7: Ancestry: British Isles
2. brain fog- yes mostly when it is time for a pleb
3. suburbs
4. Not really an outdoors type
5. alcohol consumption- had my fist drink at age 31, second at 41 and just a few since then
6.I never really had any symptoms, found this by accident but I do remember the brain fog before I was diagnosed.
1) Family members: hypothyroidism, mitral valve prolapse, fibromyalgia, colon cancer, macular degeneration, breast cancer, dementia.Grandfather with bronze diabetes died at age 58.
2) parent w/dementia
3) grew up in urban/suburban setting
4) Loved the outdoors and nature---seldom got out in the countryside, though, as a kid. As an adult---oh yes, love getting out in the "boonies".
5) Not regularly. Maybe wine at meal time---once a week of less.
6) adrenal and thyroid issues that got worse despite medical treatment.
2) Do you suffer from "memory fog" now or have you in the past? Yes, now and in the past. Phlebotomys do help
3) Did you grow up in the city, the suburbs, or out in the country? .. Suburbs mostly and country the other times
4) Were you ever the "outdoors type" as a child or adult (did you play in fields or tromp through the woods)? Spent alot of time in the woods and outdoors
5) Do you or did you ever regularly consume alcohol? NO
6) What was your first symptom? Brain fog big time
2) Do you suffer from "memory fog" now or have you in the past?
Yes, almost daily and my iron levels are now in "normal" range.
3) Did you grow up in the city, the suburbs, or out in the country?
Grew up in a small town, in Central Illinois.
4) Were you ever the "outdoors type" as a child or adult (did you play in fields or tromp through the woods)? I was very outdoorsy as a child. Climbed trees, rode my bike around town, played in my neighbors over-grown yard, and made forts in the bushes. I was always outside.
5) Do you or did you ever regularly consume alcohol?
I would say that I have consumed more alcohol as an adult (in my thirties) than any other time in my life...I may average about 4-5 alcoholic drinks a month. Not too bad, but too much, I am sure for HH.
6) What was your first symptom?
Hair loss...I would shower and hair would just come out by the handfuls...(Diagnosed at 38 yrs. in January 2011)
Bonus Question (pressing my luck):
Do you know anything about your ancestry? I did some searching on ancestry.com and found that my roots go back through the Netherlands, Scotland, and England.
Go far enough back in the family tree---and they come from every corner of Europe.
The highest rate of HH in Europe is in Ireland.
it does not run in his family...all his siblings got tested. No nothing specific..
I say he does have memory fog but he has had depression all his life..so not sure but he is worse since finding out he had it..could be pain meds too.sorry not specific enough for you.
He grew up in large city but was out in country as often as possible as child. Since meeting me he has lived more rural since i do not like cities..so most of his life in rural areas but worked on highways..so cities
He did go outdoors, fishing, hiking,hunting as much as possible. He met me and i got him back packing and hiking. so yes on this one
He is alcoholic and both his parents were addicts. he is in recovery for last 6 years now or more..
When we hiked..he complain that his ankles hurt going down hill. i kept saying go to the doctor..took almost 10 yrs till they found it..and his ankles are wrecked now..can hardly walk.
He has German descent..went to Canada first than down here early 1900's.
His father died in his early 50's due to alcoholism..liver went so it could have been complicated by this disease ..just no one knows..he did not have arthritis symptoms like my husband has had. thought i add that just in case it helps..
2) I haven't met someone yet who has HH who hasn't suffered from memory loss or brain fog.
3)I realized a while back that growing up, well water was not the best for me, but back then, we had no clue.
4) Always, always outside.
5) Yes, alcohol was consumed prior to the disease and is still occasionally consumed.
6) First symptom was fatigue and then HH triggered PCT which was diagnosed first. For more on this read all the HH links on http://theburnedhand.com/
Bonus Question: Lots of European ancestry.
2) Yes I have memory fog
3) Suburbs
4) Majority of my childhood through early 20's was spent outside.
5) Yes before diagnosis / none since. I do miss a good quality cold one watching football.
6) Looking back on it I'd have to say fatigue.
Bonus - Eastern/Southern European mutt.