Good post. xoxox

I HATE THE WORD CURE; IT MAKES MY BLOOD BOIL..... NO SUCH ANIMAL WITH AUTO-IMMUNE; ONLY MANAGEMENT AND SOMETIMES IF ONE IS EXTREMELY LUCKY; REMISSION! Tangerinebear xo

For you to say no one wants they're HS to go into remission is just maddening. You go into remission for 3 years and all of a sudden you forget what its like. No one wants to be in pain constantly. Tangerinebear you keep doing what your doing for your daughter.

By the way you do sound like your selling fish oil.

I will check out the blog.I am always open to learning more about this disease and what works for others..although I don't appreciate being told that I don't want to get better and only want to bitch..I hate this disease and I want it in remission.This is a place for people to vent,and to help one another..not to put people down and accuse them of just wanting to be victims..Positive words produce positive results..if you want people to pay attention you need to always keep your cool even when you feel you are being insulted while trying to help others.People will be more likely to hear what you have to say if you are being kind and non judgmental.

I appreciate you posting about what has worked for you and I will check out what you have posted..but please don't put all of us in the same boat...there are a lot of people who want HS to go away.I know I do.

I really don't think it's that people with HS want to have it and bitch and moan. I think it's more like we are all skeptical of things working because not much seems to work. Trying to get your post read by writing you have the CURE would upset a bunch of people that thought they had it figured out a million times only to suffer more. I'm totally into all things knowledge...but I know that I listen to people a lot more when they present it for what it is. Saying "hey this put me into remission" would have made me click on your post faster than "hey I have a cure". I'm not really offended at all by anything here...just trying to state what I observe. I read some of the blog and if all else fails I will try it...I just fear MY trigger food would be potatoes...and that would suck.

I did read your blog post but when you said you had a cure I was like WHAT? So am sorry if I have offended you.... I know paleo is a healthy way to live....Kids with Down syndrome do not have the same genetic issues as normal people....I know for sure that they are VERY prone to skin issues, health issues on and on...... I have no doubt that something I am giving her is still irritating her skin..... I am always thinking how I can help by doing this or that..... I am glad you are in remission and yes, you are very lucky...... not all acheive that with diet...... like I said, I know many who are doing this diet and still get lesions eating paleo...they are less aggressive but lesions none the less. I do think that the paleo diet is a HUGE help for HS...... I am very happy for you that it turned around so quickly for you and I applaud you for your hard work and your blog.... again, I apologize for getting lets say testy here.... Diet is the key for HS. The typical American diet just exacerbates the HS and most medical issues. I am 60 years old and do the paleo diet as well with my daughter and I have energy from morning to nite and feel great. I want to thank you for researchiing Down Syndrome, PCOS, and HS. that shows me you are a kind and caring person and go out of your way to try and help others...so again, accept my apology for being so rude..... I have gone thru much with my daughter and would climb the highest mountain for my daughter. it sounds like you are a super parent as well and do the most you can for them with diet. I applaud this...... I do stand by my statement that hormones play a role in the body in all things...... and HS and hormones are intertwined....I do believe this BUT I also am a firm believer that diet is the key..... If my daughter breaks out I also think, what did we do different and what is the cause? I think many would benefit from this diet for their health but it is not easy to pull off....One must cook.... I find paleo liberating myself cause I cook the same stuff alot....it works for me and my daughter...AGAIN, When I am wrong, I admit it....You are a caring person who wants to share your success with the group; Please dont shut us out because of my stupidity...... We all need eachother and I am humbly asking you to forgive me ...Tangerinebear xo I am very happy to have you with us~

I have to agree...I don't appreciate you posting that people who have hs just want to bitch and moan about it and not DO anything to help themselves.
I did appreciate taras post and blog..and I didn't see any reason to jump her about her choice of words per se..although like many others..I thought it maybe could have used a little tweaking..but you can't please everyone all the time. (raises hand--Guilty of trying that way too many times XD)
I can understand how tangerinebear felt. We've all see CURE splashed all over our site before...and each time it was some snake oil bs to it. Hence why I did not even bother to reply to SnakeBeMyNames posts...I just don't even bother anymore if I think it is bs. I did check out tara's though..as I was curious more than anything.
I'm definitely NOT looking for a quick fix, although that WOULD be nice. And being one that is considering surgery, I wasn't too hip on the way surgery was presented..like it doesn't help at all or something. And I'm at the point, with having modified my diet 9 ways from Sunday, having tried a bazillion different things both topical and internal, where surgery is looking mighty good right now. So the last thing I really need is someone casting a shadow on surgery.
Tara..if you want to leave the site..that is your choice. Although it would be a shame to miss out on what you could contribute to the group, or what you could glean from our group or from us as individuals..All I can say is that although the initial presentation post could have used a little work, overall I think it contains information that could help some, and I appreciate you sharing it with us. I did not know there were different types of paleo diet out there. I thought it was just paleo and about as far tweaked so far as diet could go as one could get.
Tangerinebear, you keep doing what you are doing, your trying, and I know well enough to know that if you think there is something out there that will help your daughter you will give it a shot. Much love to you and your daughter.

Having had successful surgery myself and dealing with HS for many years trust me. WE DONT WANT TO BITCH AND MOAN. What the hell is your deal coming on here upsetting people and offering a cure. Reread your insulting post. I'm sorry but I dn't give a shit if you are "I'm actually off to a conference to visit with doctors, naturopaths, nutritionists and people who specialize in auto-immune conditions." Do you know how pretentious and assinine you sound. Like we haven't been there done that. No, we just like to bitch right. Go sell your "cure' somewhere else. You have offended 90% of the good people here.

I have to agree with the posts here - great it worked for you - I personally would like to never have to talk about HS again but the fact is it is a constant in my life. I dont come on here to bitch and moan, I come on here to get support from people who understand instead of people who dont know how awful it is just saying"oh, Im sorry". Not fair to insult us when we are all dealing with the same issue.

I find this whole discussion to be very disheartening. I admire the efforts made by everyone here to live a better day even though the daily cost of suffering with this disease can be demolishing in so many aspects. I come to this support group to find inspiration when my days get the best of me and while I don't always find encouraging remedies or information regarding this disease, I do find the courage to keep going no matter if it's through the awful day someone else is having, or something posted that is joyful. This isn't joyful.

"In adding this Comment, I (insert username here), do promise to be nice." Does everyone not see that when they are about to post?

If your advice isn't given the feedback you expected it to receive, I'm sorry it wasn't taken the way it was intended. I believe 100% that there is no 100% cure for any particular person. If something worked for you, it doesn't mean it will for others.

As someone who is always looking for information, I followed the link and read that blog over very closely. I respected the information and how it was presented from a personal front until I saw the childish behavior on this support group. I won't continue to read, even if it is to 'better' myself. I'll take my place among the friends I've made here who may have bad days and 'bitch' but I feel they are more than entitled to express how they are feeling. Afterall, I am here to support, not to put up a facade until someone disagrees with me.

@WNic, Not everything can be put peachy espically regarding HS. People have a lot of feeling towards HS and I can appreciate comments that are not always nice because I feel that they are honest. I think that everyone with HS has thick skin or is in the process of thickening up their skin so comments that they don't agree with shouldn't upset them. Whenever I see a comment that I don't like or agree with... I'm just on to the next post.

This lady is crazy. So glad she's gone. Who WANTS to bitch about H.S.?! No one. We all came here to support one another not play victims.
Yay, bye Tara...

Bumps: Can you not just let it go already? Really, your negativity is contagious...and its the last thing any of us need. If Tara is crazy, you are close minded. Leave it at that and keep it moving.

I was really trying to mind my manners and just ignore your comments but for real, surgery is not the answer for everyone and so maybe Tara's autoimmune paleo diet isn't for you but some of us actually appreciate the insight in spite of what many perceived as offensive when she presented what has worked for her. I find you calling her crazy to be childish AND offensive so how does that make you any different from her?

Maybe it is time for me to leave this group too as I have no desire to engage with a closed mind name caller.

Have a nice day and sorry for being critical but like I said your negativity was contagious.

Feel free to leave or stay Mixie, that's up to you. I do not say that surgery is the cure. The whole point of contention here is just that. She used the word cure, then became defensive in a private mail to me before coming to the conclusion that she meant remission. Amoung other things.Please ignore when you feel it is neccesary. I don't post half the shit I would like to either. My issue was with the fact that she had people here so offened, she made derogitory remarks about them 'playing victims' and 'bitching' when many have tried the diet and surgery and medications to no avail . If you do not agree that is fine. I don't advocate a cure. Never have.
Her negitivity towards at least 7 people here was indeed contagious, by virtue of the fact that it is still stirring up muck.
I am not mad at you Mixie, but this is a little more than just a single negitive remark.
I was just excited because the negitivity brought by her remarks left when she did.I will not mention it again since it has made you feel uncomfortable here. That was not my intention.

Wow, people are really bored. I don't care. Whatever works for you. Good Luck sweetie, please stop bugging me.