Starting my research by referring to Wikipedia, I found out that this is usually the case with those afflicted with HS – they do not even tell the rest of their family, "because they are too ashamed!" The disease is now known to be an autosomal dominant disorder, in other words one which can be inherited from a parent who carries only a single copy of the gene. It is not infectious—a godsend because the suffering must be horrendous! Once thought to be a rare condition, probably because it was so rarely reported, it is now known that that is not the case and, for an unknown reason, women are several times more likely than men to develop it. The cause is unknown but, as far as I'm concerned, the fact that people can inherit it is bad enough.
Although the literature on the Internet seems to support the fact that the autosomal gene has not yet been mapped, I did find one reference in which the writer maintains that it has, but unfortunately provides no details. It would help if one could establish the gene pool that is at risk, but I've not been able to find such info for my distraught new acquaintance. Judging by her blonde colouring, I have even written to a good friend who is a doctor in Sweden, but he also could not find proof of any such details concerning this ghastly disease, which must be worse than leprosy.
Exploitation on YouTube
It was a huge mistake to consult YouTube at a friend’s suggestion—not because the articles and images posted there for the right reasons were so tragic that I wept, but mainly because, as is so often the case, it made me livid to see, among those postings, the usual exploitation of an illness for the purpose of marketing useless cures. Meanwhile there is little I can do but try to promote awareness!
Article comments
— go to most recent comments1 - Teri Korri
Thank you for helping raise awareness of HS. It's definitely painful both physically and mentally, a disease no one wants to speak about. My story is on my blog. There are many others who are gathering together on Facebook and Yahoo groups.
Again thank you
2 - Michelle Veasey
Thank you also for raising the awareness. We have all been treated in the same way by the doctors. There are quite a number of us who converse regularly sharing tips and methods for managing the disease or at least trying to lessen the symptoms and lead relatively normal lives. We all feel abandoned by the medical community, with the only solace being with other sufferers who know how we feel. If you wanted to speak to us to find out more about the disease I am more than happy to discuss my own experiences as I am sure many of us would. Thank God for social media is all I can say at least we don't feel like freaks of nature on our own! Thanks again :-) x
3 - Gandalf Parker
I also thank you for posting this.
In the HS support groups on FaceBook we comfort each other on bad days, we compare notes about how many wrong diagnosis we suffered thru, we complain of doctors who leave the room to google it then come back with horrible information that is 5-10 years out of date, we post pictures that we would never post publicly (and never should because the ones that are public are bad enough). We even make jokes. I HIGHLY recommend anyone diagnoses with HS to join one of the online support groups.
By the way, the genetic thing is still in debate. It might not be the CAUSE of HS but the genetic link that some people seem to have might be due to a genetic predisposition to something else that makes HS more likely or more recognizable in those people.
One of the surprisingly WORST sites for your doctor to find on HS.
One of the best sites for your doctor to find Hidradenitis Suppurativa
One of the most complete collections of the various theories of this no-known-cause no-known-cure disease
SkinChannel.com the link for Hidradenitis Suppurativa
4 - Marie Warder
Thank you for your comments which are especially important to me if I am to learn more about HS. Once I get hooked on a worthwhile cause (which yours most certainly is)I put my heart,soul and prayers into it and I have already taken the plunge.
5 - Mike W.
Being someone who suffers with HS I appreciate this article and any other form of awareness. THANK YOU a million times over. It is so very frustrating having to go to doctors who know very little to nothing about it, you end up knowing more than they do. Tired of being told "there's not much else we can do". You get so tired of being treated like a drug addict for pain meds as well. Again, Thank you very much.
6 - Libby Sandoz
I will simply say THANK YOU. More awareness. Wish someone would force the Dr's to read an article like this...I am SICK of living with this dreaded condition. Can only pray for awareness & treatment in the future.
7 - Mechelle royce
Thank you so much for this article...as I type this I am in a hospital bed and due for my 6th surgery in the last year because of HS.
8 - Mandi Hanson
Friend has this disorder and it makes me so said to hear what she and others are going through. The worst thing about it is the friend is unable to get benifits to help feed her family
9 - Bev Alderson
Thank you so much for helping raise awareness of Hidradenitis Suppurativa you will never know how much your article is appreciated in the HS World.
I suffer with HS and I'm co owner of a support group for people with HS once again many thanks for all your hard work!
10 - Marie W.
Thank you for the info. At last I have found a link to a support group. Not one of the organizations on the Net have bothered to respond.
11 - Marie W
I no longer have either the strength or the stamina that I devoted to Hemochromatosis to do anything significant to help fight this new battle, butâ€"-using my voice-recognition deviceâ€"-I intend to "write" about it, and plan to start by doing what I can to publicize Rare Disease Day this year. This is an annual, awareness-raising event co-ordinated by EURORDIS (Rare Disease Europe) at the international level and the National Alliances of Patient Organisations at the national level.
February 29, 2012 marks the fifth international Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 25 European countries. On this day hundreds of patient organizations from more than 40 countries worldwide are organizing awareness-raising activities converging around the slogan “Rare but strong together”.
Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!
12 - Jo Redmond
Thank you so much for taking time out to raise awareness for such a disabling soul destroying disease
13 - Meg Stuart
Responding to you request on Facebook, my family and I are praying.
14 - Brett and Muriel
You have our prayers and support, that's for sure!
15 - MW
* When Velpeau identified and described hidradenitis suppurativa in 1839, it was primarily found among families of Sephardic Jewish, Italian, Greek, Middle Eastern and Northern African ancestry.
16 - Dr Dreadful
Thanks for this article. My wife suffers from HS: in her case it seems to be abating somewhat as she gets older, but she still has regular outbreaks. Then of course there are the extensive scars that will never go away.
One of our biggest frustrations is that the medical community knows so little about the condition. Though painful and unsightly, it's not life-threatening, so it's not one of the "glamour" diseases that gets research funding thrown at it.
The baton of education and awareness therefore seems to be carried mostly by the community of sufferers, their friends and families, and the occasional interested physician.
17 - MW
Evidently Electron beam radiotherapy has been a successful treatment of hidradenitis, especially in Europe but it is not a common treatment option in most of the United States, as radiation oncologists generally refuse to treat patients with non-malignant diseases because of the potential for secondary radiation-induced tumors in the long term.
18 - Bev
Please don't do any more than you think you can Marie, we don't want you to end up ill
I'm sorry that none organizations on the Net have replied and I hope the link to the group helps you to understand HS a little more.
I'm sure anything you do will help us and thank you again for trying.
19 - Claire G
Thank you so much. Just knowing someone cares enough to try raise awareness means a lot. You are a true angel, thank you again xx
20 - Marie
I have just been sent a link to an article by a physician in Denmark, Gregor B.E. Jemec, M.D., D.M.Sc., which appears in the New England Journal of Medicine J Med 2012; 366:158-164 and I count the fact that the article is evidence of renewed interest, as proof, also, that the prayers are working!
21 - Tom Hennessy
Are you VERY sure it isn't connected to hemochromatosis ? Pretty much every disease so far has been linked to dietary iron overload , the same results as in hereditary hemochromatosis. Psoriasis is related and IT has high iron in the skin.
"Increase in free reactive iron in psoriasis"
The problem which has to be overcome in the treatment is noone wants to become vegetarian and NOT eat the high iron meat diet. If they don't STOP their high iron diet , meat diet , they will never be able to totally eliminate the stored iron which accumulates.
"Role of free reactive iron in psoriasis"
"Our findings indicate the increase in level of free reactive iron and lower level of antioxidant status in psoriasis. This may contribute via free radical generation to the development of secondary cellular
damage and pathological state in psoriasis vulgaris. Therapeutic use of iron chelator and antioxidant drugs may be investigated for beneficial role in psoriasis."
"Psoriatic patients exhibit high iron and low ascorbic acid concentrations in the dermis"
22 - Tom Hennessy
THIS shows a mouse doesn't get hyperkeratosis when fed a low-iron diet.
"Absence of hyperkeratosis in mice fed on low iron diet"
"Low iron diet retards 12- O-tetradecanoyl phorbol-13-acetate-mediated tumorpromotion in murine skin"
"Cutaneous iron levels were also lower in mice fed on low iron diet than in mice fed on normal diet. Histopathological sections of the skin portion adjoining tumors showed a lower degree of epidermal hyperplasia
and lesser infiltration of inflammatory cells in the dermis, and absence of hyperkeratosis in mice fed on low iron diet. Thus, in this study we observe
that the tumor promoting potential of TPA is reduced in mice fed on low iron diet, which is also accompanied by lesser inflammatory changes in the skin of
tumor-bearing mice fed on low iron diet."
23 - Tom Hennessy
"Iron chelators decrease Tumor necrosis factor alpha (TNF)"
"Although deferoxamine's protective actions can be attributed to inhibition of oxygen free radical generation, these experiments
also document a decrease in TNF release."
24 - Marie Warder
Thank you for all this info. Very useful!
25 - Tom Hennessy
Thank you for all this info. Very useful!
I have much more information about iron because of my Herbivore Hypothesis.
When I say it is related to 'genetic' hemochromatosis I mean the skin disease is due to iron so 'could' just as easily been diagnosed in your husband due to HIS increased iron.
Increased iron is NOW being called 'age-related iron accumulation'.
They USED to say this GRADUAL iron increase didn't exist and therefore my Herbviore Hypothesis couldn't possibly be true.
NOW that they HAVE recognised the FACT iron builds gradually in the body and so they have christened it , age-related iron accumulation.
That is WHY there is disease in humans.
Man is an obligate herbivore-frugivore eating meat which leads to disease.
Herbivore Hypothesis.
They are finding iron instead of being a boon , iron is instead , a bane.
"The effectiveness of discontinuing iron-containing prenatal multivitamins on reducing the severity of nausea and vomiting of pregnancy."
"Avoiding iron-containing multivitamins is effective in majority"