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*
1. HH, cancer, heart disease, athritis, female issues. im not female. male baldness.,thyroid issues, poor vision.
2. yes even after de ironing.. i transpose numbers all the time, bad short term memory
3. grew up all over, los angeles , oklahoma. washington oregon,
4. yes and still am. in my world as a child the outdoors was safer than home.
5. yes for 40 years. 1.5 sober.
6. thats a good one. when i was first diagnosed . i had fatty liver, enlarged liver and spleen, extreme high cholesterol, duodenal ulcer, inguinal and abdominal hernia's , and low blood pressure. just on a hunch the dr tested me for HH, it might have had something to do with my mom had , allergy to sunlight , a syptom of HH. she had it and knew it but didn't tell her kids. my sister is a carrier, as are my children.
sorry can't help you on the family history. i don't know much of mine, mother married allot and didn't have contact with father. knew my grand and (great grandparents when i was a boy in oklahoma), i know i am 1/4 injun, and dutch and irish. oh yes and stunningly good looking. if you don't believe me just ask. lol
well you know what i know
i can't see how you are nosey. we discuss some very personal stuff in hear. i think all the info we can accumulate and use is to our's or our children's benefit. good luck my friend and possibly cousin. lol
dc
1. A LOT of cancer, both sides- 5 colons, 1 endometrial, 1 breast, 2 nasal, 5 w/heart disease of some sort, hypertension, heart attack, etc..., 1 kidney issues, Arthritis, and a couple with hypothyroidism, Dad with Alzheimers AND alot of relatives with apnea. (untreated, of course), maybe 2 with diabetes.
2. Yes, pre & post overload
3. Parents & their families grew up in the country, then my parents, me & sister in the city (for the past 56 yrs)
4. Played outside a lot but not much as an adult (occasional boating, fishing & beaches)
5. Alcohol in my 20's but most of my entire family doesn't drink (dad's side did)
6. 1st symptom? Extreme fatigue
Bonus Q: Nope, we're caucasion, and have no clue really. Eaton & Smith are family names (I've heard Scottish, Irish, and German but no one is SURE!
additional info.... growing up: alot of iron skillet usage thru the years, lots of pies & cakes (sugar), lots of raised pork, beef, chicken & eggs & vegetables (organic, I guess they now call it). Lots of farmers in the family- mostly tobacco farmers. And yes, all of the men and a few of the women are/were smokers. Adult yrs: lots of processed crap... soups, canned veg's, hot dogs, lunch meats, etc.. eating out in the past 10-20 yrs has drastically gone up compared to the prepared "fresh" meals prepared at home. A few family members worked in cigarette factories, 2 in a chemical plant, me in a restaurant in our airport (7 Yrs of fuel fumes) & now 29 yrs of hospital work.
Maybe TMI but some I think could be note worthy. You're gonna need a database to compile your info:)
Good Luck & let us know what you come up with.
zzzzzzz
Yes -- ADHD, diabetes and arthritis
2) Do you suffer from "memory fog" now or have you in the past?
Yes -- I always attributed this to my thyroid disease b/c the memory fog didn't start until my thyroid went out of whack.
3) Did you grow up in the city, the suburbs, or out in the country?
suburbs
4) Were you ever the "outdoors type" as a child or adult (did you play in fields or tromp through the woods)?
Definitely outdoor type...played in the woods all the time.
5) Do you or did you ever regularly consume alcohol?
I've never been a big drinker. Most of my adult life, I go months between drinks and when I do have one, it's usually just one and sometimes I don't finish.
6) What was your first symptom?
fatigue
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.
I'm a quarter Swedish (Sampson) and the rest is a mix of German, Irish, English and French.
1. Heart disease, arthritis, female problems, thyroid problems, HH
Marfans Syndrom
2. yes, before and after I was de ironed...
3. Grew up all over California, several years in Hinkley a couple in
Northern CA, couple hopping around southern CA, the rest in
central California.
4. Always running around outside as a kid..Never inside until mid 30s..
5. No..
6. That is a really good question, thinking back I would have to say
there were several. Several miscarriages and amenorrhea I would
say were my first symptoms. Fatigue and thyroiditis...
My background is mixed, German, Irish, Welsh, & American Indian.
Family history: Mother & father divorced when I was in third grade so I didn't know much about my dad's family, knew my dads father died of heart attack in his 40's and my uncle died in his 40 of a heart attack my dad died in his 60's of heart but had first heart attack at 42.
Moms family, grandmother had TB , and my moms uncle had colon cancer. Both of her sisters had cancer, one died of lung cancer. Her brother has high iron but no HH. Arthritis also runs in her family.
We always had family gardens, and ate lots of fresh produce, growing up. My family had grocery stores and of course we had only the freshest RED MEAT at our meals...
Grew up in Hinkley CA for almost seven years, yes the one in the Erin Brockavich story. So not sure if some of my problems come from HH or a combo of chromium 6 and HH..
Good luck with your questions....MissSophie
1)IBS issues,Mine is fructose malabsorption,Thyroid disease with cancers, primarily hypothyroidism, diabetes (although I don't have it), scoliosis and hearing loss(otosclerosis), alternating HBP with LBP,some alcoholism (not me), prostate cancer(not me) , mild depression, tics, tremors.
2)Brain fog and short term memory problems
3)GREW UP IN THE CITY and good dental care? plenty of Fluoride.
4)Alabama Lake baby! Plenty of outdoors!
5) Did drink ETOH in twenties more than any other time. Now very seldom, and it's only vodka and very little of that.
6) brain fog
&) Bonus: My ancestors reportedly come from Northern England, an potato famine Irish folks.
1) HH, arthritis, scoliosis, heart issues, and thyroid (myself only)
2) memory fog-not sure
3) the suburbs and the country
4) definitely outdoors a lot as a child, young adult; lived near large woods and spent a lot of time in this environment.
5) yes, but cut back to infrequent and social drinking after HH diagnosis
6) ocular migraines and low grade fever for two years; also fibromyalgia like symptoms and heart palpitations. All have gone away with the phlebotomys
bonus: I've studied my ancestry quite a bit and have even written a book on it- English, Irish, Scottish and German.
Mannnnnnn, that's gonna help you compile all our data! Keep us posted when you start seeing the patterns:)
zzzzz
2) Yes, a bit.
3) Suburbs
4) No, not much, mostly an indoors sort of guy.
5) No, occasional drinker in the past, but nothing regular. No alcohol now due to cirrhosis.
6) Bad gall bladder.
Bonus: Not Iceland, mostly Irish some Scottish, a sprinkle of German, and a dab of French somewhere in the distant past.
2) Yes, now. Not so much in the past.
3) Suburbs
4) As a child, yes.
5) Yes, in my 20s/30s socially.
6) What was your first symptom? Neuropathy - post-vaccine.
Bonus Question (pressing my luck):
Half Irish on my mother's side - they emigrated during the potato famine (I'm allergic to potatoes BTW). On my father's side - in the United States back to 1680 or so - we think before that England and/or Germany.
Good luck - hope this info helps you. Please share the results!
2.No brain Fog
3. Out in the country
4. Always outdoors
5. Very little alcohol
6.Weight gain and bronzing skin
2. Definitely have memory fog. I was diagnosed last august, but memory fog has been getting worse over the past several years.
3. Grew up in the city, but up until my Dad passed away when I was 16 always spent time in the woods. Even afterwards always enjoyed fishing/ hiking.
4. Always loved romping through the woods, and as I said before, fishing /hiking
5. Yes I enjoy a cocktail on occasion
6. Chronic pain, blood in my urine, and chronic fatigue
I really don't know that much about my ancestry. A little German, Polish, and American Indian, maybe some French. Probably more, I just don't know
Here are my answers
1) Do you have any illness that seems to run in the family?
NO
2) Do you suffer from "memory fog" now or have you in the past?
YES: in the 5 years or so before diagnosis, I'd lost the ability to quickly take in new info & organise it into usefull data etc. (essential for my job!)
3) Did you grow up in the city, the suburbs, or out in the country?
suburbs, (till 10yrs old),
country town (until age 23, then all city)
4) Were you ever the "outdoors type" as a child or adult?
Yes, never indoors as a child, still active outdoors now (sports)
5) Do you or did you ever regularly consume alcohol?
Yes, since age 18, drank regular & quite heavily until age 30'ish, since then maybe only a couple of beers or wine on a Sat night
6) What was your first symptom?
IBS type symptoms (cleared up by the time ferritin droped below about 1000)
Bonus Question (pressing my luck):
Do you know anything about your ancestry?
Dad's father line: All Irish (they also have a Scandinavian marker gene)
Dad's mothers line: Scottish & English (some names suggest some earlier Germanic origins, but yet to prove)
Mother's line: English & Welsh (with some French, German & Spanish about 200yrs ago)
PS. but I know one old name (Neeld) is said to have originated in Ireland but flourished in Scandinavia with the Vikings before ending up in England before 1066, I'd bet this is how my mothers side got the gene (though it could be from anywhere of course as most lines we've not traced this far back)
1) Grandfather (mothers side) - Diabetes, Father - Dementia
2) Yes, but I didn't know I had memory fog until it went away after about the 4th Phleb. Only symptom I knew about was fatigue.
3) Suburbs and country
4) Yes, lots of outdoor activity.
5) Socially in college.
6) Fatigue
Bonus Question (pressing my luck):
Not really sure about this one, but I'll try
Father's side - Scottish, Irish, ???
Mother's side - German, ???