Hs should be changed to the loneliness disease. For the last two weeks I’ve literally been in bed things are so bad right now. People with hs are the strongest people alive I believe. I literally have not had human contact for over a year. No hugs nothing. It gets tough. But I will survive. Your comments help so much they literally help me get through the day.
20 responses to “Hs name should be changed!”
-
As a fellow HS sufferer, your posts always draw me to strong compassion for you. I am always so concerned that your physicians are not giving you the best care available. I know I have encouraged you to inquire about Humira in the past. I do again….as it is now approved for HS treatment….please try. I have the emotional scars as well as the physical ones, too. I know firsthand the embarrassment. I know how the odor effects people. I also know the relief from Humira. PLEASE PLEASE PLEASE try…..I pray for you – have since the first post that I ever saw.
-
Hello. Thank you. Yes actually have an appointment next month. Hopefully giving it a shot.
-
I am so glad! The honest truth the thing that struck me so strongly is how lonely you seem. I don’t know you, obviously, but I know this God awful disease. Being alone and being lonely are two entirely different things and it seems to me you are missing the things in life because of HS. YOU DESERVE YOUR HEART’S DESIRES. Please stay in contact, I am anxious to see if you get some relief. Also……I am so proud of your effort to educate people on HS but more importantly that you are taking steps to make your life the most it can be! 😊😊😊
-
Hello and thank you very very much.b
-
-
Hello….how ya feeling? Hoping you are feeling okay and your spirits are lifted. 🎃
-
Hello thank you. Today was a pretty good day.
-
I am sorry you are having a hard time right now. I think as Margaret is right try Humira. If your current doctors are not helping might be time to find a new one. My husbands regular doctor did not know much about HS but the dermintoligst did. Find a doctor or a care provider who understands the desease HS.
-
Thank you Connie.
I don’t have the same affliction so I can’t even begin to relate. Every now and then I comment on your YouTube videos using my real first name. I, too, am disabled but relatively active. I came across your affliction because I love learning about science and medical conditions (background in Microbiology and Clinical Chemistry)
I think about you and hope you know you’re not alone in the world. Depression and chronic pain go hand-in-hand and that I do know about. {{HUG}}
-
Thank you very much.
Discovered your post last month and left a rather lengthy reply on the link for your views on HS. Thought I would add my 2 cents worth to the discussion. I have had HS since I was 15 and will be 58 in January of next year. Tried all the usual stuff. Antibiotics, soaps, home remedies. Nothing ever worked except radical surgery (under both arms and the left side of my groin with a large skin graft). From viewing your pictures I would say your case is about like the one I have only yours is maybe worse as you also have it on your bum. Yours appears about as bad as mine was in the groin and I had it far worse under my arms then it appears you do. That being said I went for years after surgery with no new flares.
About 6 years ago I started a new flare smack dab between my legs. It started to move up the right side of my groin and toward my anus. One thing, on the other post, I listed Salic acid as being secreted by the glands and it should be Sialic acid that is excreted by the Apocrine glands.
I have no faith that the Medical Community will ever work on a cure for HS as all my research shows that to this day they don’t even know what causes it. I do however have a theory. I think the glands secrete far to much Sialic Acid that works like a chemical peel on the skin. Friction causes the hair follicles to rupture trapping sweat, sialic acid, sebum, etc under the skin.
In my other post I mentioned I was taking niacin 500 mg three times a day and you have to work up to it. I have now increased it to 1,500.00 mg three times a day (will not go over that amount). I am doing that to increase oxygen to the skin surface. Since most people with HS either smoke or are overweight, the only thing I see they have in common is circulation problems. I also added zinc 50mg a day as I don’t think it could hurt. I stopped zinc oxide (diaper rash cream as it caused a huge flare on my entire right groin area). I then went back to a treatment that I had used for about 5 days I thought was helping but talked myself out of it (guess I just have too much sense for my own good if it ain’t broke fix it).
This part of the treatment I was trying sounds crazy, but I would like to go into some detail as to why I originally thought it might work.
When I was doing research I researched not only HS, but Cystic acne, pimples, etc. There was a comment on a cystic acne site where someone commented “I had a friend years ago in high school that had really bad acne and an old country Dr. told him he just needed to eat Swiss cheese. So maybe you all just need to eat more Swiss Cheese.”
Most people would ignore such a comment, however smallpox was cured when an old country Dr. noticed that people who got cowpox never got smallpox, so I decided to research Swiss Cheese. Swiss Cheese contains a bacteria P Freudicilli (Did not spell it right but not going to look it up). It eats lactic acid (which is similar to Sialic Acid in composition). It is what forms the holes in Swiss Cheese.
So what I have been doing is putting aged Swiss (not the fake stuff wrapped in plastic) in gauze and putting it on the area (you can’t put it directly on the skin as it will eventually dry and stick to hair) I found that out the hard way. Also you can’t leave it on all day (found that out the hard way as well) because when it does finally dry in 6-8 hours it causes the gauze to act like a scouring pad making things worse.
I have been doing this now for about 10 days and my HS is clearing. Even the deep seeded one smack between my legs is going down. I am not saying that it is a cure as only time will tell. But if I am right and acid is the problem, antibiotics and antibiotic soaps probably do more harm then good. They might help with inflammation, but they remove good bacteria along with the bad. Plus Sialic Acid is a natural anti microbial so I think that is why when they culture HS they normally don’t find any bacteria in them.
If acid is the cause it would explain also why many posts I have read say milk of magnesia seems to help (and Epsom salts) as they are both very alkaline in nature. Thing is you can’t keep applying them every hour and you can’t bathe every hour to remove excess acid on the skin. By introducing the bacteria from the cheese it naturally should thrive on the excess acid, continually doing what you and I can not.
My HS flares are quite large and cover a large area, so I don’t expect things to just resolve overnight. I will keep you posted on the progress. If I could beat this thing (even if it takes 3 months). At least I would then know what to use to prevent future flare ups. I think Good Bacteria just might be the answer. I hope and pray it is.
Thanks for listening.
Wanted to add one more note. I have only been taking 1,500 mg of niacin 3 times a day for a few days now. I did some checking and it appears you should take no more than 3 doses of 500 mg a day, so I am going to start doing that. When I researched niacin I also found that taking the prescription brand (there is only one on the market I think) that is time released can cause liver problems. Also the over the counter time released also has that problem. Straight niacin does not appear to cause liver damage so that is what I am taking. You should start slow to avoid having a niacin flush. You body gets used to it when increasing doses slowly.
You are so brave to share your struggle. It breaks my heart to see how you are suffering. You are an attractive man and seem to have a great personality so I hope this horrible illness doesn’t get you down. I’ll be praying for you and hope you have a good support system to help you cope.
-
Kelley thank you so much! This truly means allot to me.
Hi, my name is Leigh. I’m 21 and I have been watching your YouTube videos for some time now. I suffer from the same thing. This has been happening for about 5 years. As I’m speaking right now, I am stuck in bed with severe pain. I think it is amazing that you have been trying to create awarness about this disease. I would love to talk to you more and see what you know that I don’t. I’m to the breaking point it hurts so bad. I’m a female so I get them in other places and it’s very painful. Thank you So much for your videos. I enjoy watching them.
-
Hello Leigh. Thank you. I have your email I will email you directly.
I just saw your videos and read your post and I’m very sorry that you’re going through this something I’ve never heard of until you brought it to light .
It looks extremely painful and nothing compares to the pain I’m sure you endure
I was also very saddened to hear that you don’t have any human contact because everyone needs to be hugged cared about and supported especially when they’re going through what you are
I would hug you every day if I could
I live in Stockton California and I will share your story on my Facebook page b
ecause we need scientists and doctors to figure this out and give people like you some pain relief and hope for a cure
you are in my thoughts and prayers
God bless you
-
Thank you so much. Your post brought a smile to my face.
-
I’m glad to hear that. I wish there were something I can do to take away your pain and help you with what you deal with , but I am a good listener
If you ever need a friend please contact me at Girleegirl_40@yahoo.com
I pray that God will heal you -
Thank you. You’re very kind.
-
Hidradenitis Suppurativa 
Leave a reply to hshelp Cancel reply