Hidradenitis Suppurativa Support Group

I can tell you that my HS come from my father’s side. I have it, my uncle, my Grandfather and my Great, Great Grandfather had it. So far we believe it only skipped my Great Grandmothers generation. But who knows, someone may not have come forward. I always thought it was weird that I was the only female in the family that got it or came forward. I have a friend that has it and so does her daughter. So I guess men and women can pass it down. My family always said that we wouldn’t know what children in the family had it until they hit puberty. But after reading the groups threads I see that some children are getting it before puberty. I try my best not to stress out about it. So far there isn’t anything I can do to stop her from getting it. I just try my best to bring awareness, and I am trying to start a local support group to help me with fundraisers to donate money needed for research. Right now you are doing the best thing you can do, and that’s comparing stories with others that share the disease. Now if we could get some researchers and doctors in here to read our comparisons we might just get one step further.

You could choose to educate yourself about autoimmune illnesses & opt for the gluten free diet, or Paleo. That will protect you from getting other autoimmune illnesses including cancer & your HS will clear up, not go completely away, but in remission so that you can live a normal life. Plus you will have tons of energy & look younger with a great complexion & perfect finger nails. ;)

If you want to know which genes that you have you can test thru Enterolab.com & you could get your husband tested. It seems that those of us with these genes unwittingly choose a mate with similar genes...

gfpaperdoll, I think your full of B.S. You have said yourself that you DO NOT have HS so how the hell can you get on here and tell us what it is like or what will put it in remission?! You sound like some loony off on a tangent, please spare us!

Now for the question.. I have 3 children ages 18, 8 and 3. My 18 y.o. is a boy who shows minimal signs of HS..we attribute this to normal teenage acne, and do make sure he receives antibiotics and checkups with MY doctor, so far nothing has stood out as alarming to us, and he is a "normal" 18 y.o. kid living his life happy and sassy! I too was in deep despair when I learned this could pass to my children, and had I known then I probably wouldn't have had children, but I am so glad I did, I can not imagine a second without them! Besides, while there is no cure, we can slow the progression down to a crawl if it is caught and diagnosed early enough, and as HS sufferers we KNOW what to look for and how to get help! I would have a dozen more kids if I could, please don't let HS scare you from one of lifes greatest joys EVER! Believe me that child will never look at you and ask why you brought him in this world.. I mean YOU havent asked that of YOUR parents have you? Certainly not, and he wont ask you either! Just love them unconditionally and completely while they are little then love them with wary caution always on the lookout for signs of HS when they are about to hit puberty! You will never regret it!

RebeccaV, I respect your thoughts. Unfortunately I am not a nut case. I wish I did not care about your suffering, but I do. It seems that most people that have HS only talk to other people that have HS & have not learned about all the issues out there about the autoimmune system. There are a lot of people that have HS that are now trying the gluten free diet with success. So if you have not honestly tried the gluten free diet, & soy free, dairy free & maybe sugar free & met with a nutritionist & started eating a healthy diet with no fast food, then I think that your letting yourself down & your children.

Just because HS is hereditray is no reason not to have children. There is a thread going on in the celiac forum about the same thing. We know our illness is hereditary but we also know that diet controls it & we know that people are looking for a cure.

I just ask that some people in the HS community hear what we are saying. We get the same flack from the people that have crohn's, fibromyalgia, RA, Lupus, seisures, migrains, etc etc etc. But you know what some of them listen & get well & then they try to help others like we helped them.

So anyone that does not want to change their diet is welcome not to. I feel it is my responsibility as a woman to help as many other women as I can. Although I do not know why you would not try it. Are you afraid that it will work & you will have to give up bread & cake? There is nothing to buy, no one to pay, you can continue whatever treatment you are using now. The only thing you have to lose is your pain & the cost of medical bills for surgery...

i agree with rebecca, if you dont have the disease then you really dont have the right to judge. your last comment paperdoll, is making it sound like everyone with HS is overweight and don't eat healthy. saying we are afraid of losing cake. you have no right. you dont have this horrible disease! and i personally and underweight, eat very healthy!. i haven't touched fast food since i was a child. i also steer clear of your worshiped gluten free diet food. so i am doing as your special treatment says, and guess what..... is a crock. DONT JUDGE US! YOU DO NOT KNOW US!

WHOA....WHOA.....WHOA..... "Gluten free diet"? I think that mens no BEER right? lol I know it has been a little while since I have been on here, dealing with some major personal battles, but when did HS become an autoimmune disease? Now I can see having HS and also having an autoimmune disease..... I am in stage three HS with open seeping sores under both armpits and other problems in my groin. I routinely see my personal doc and dermatologist, and it has never came up. I've been through soooo many tests.

Ggpapperdoll I will have to say that the posts that I have read of yours have been very entertaining!!!!! What are your credentials? If you don't have HS how can you tell us what works? Seems to me that the whole gluten free is a some kind of new age crock. I did chuckle a little reading the posts though!

As for HS being hereditary?? I have looked up and down my family tree looking for a little branch that might have had HS and haven't found it. I guess I'm the lucky one! Don't be hesitant to have kids.... have a couple!!! They are a blast and they will make you learn SOOO much about yourself and life.

Here is a link to a blog by a lady that has HS & used to drink beer

http://successfullyfailing.com/200...