thank you. I've had it for 50 years and it still is a problem. I'm a nurse and I self diagnosed myself despite seeing many doctors. I now help patients that come in to have their abcesses drained surgically and even then they are told that just have an abcess and are not told what the real problem or diagnosis of Hidradenitis Supportiva. It's sad. i'm glad your helping to spread the word. Every little bit counts. Just like me. Hang in there. The worlds a better place because of people like you
Thank you for sharing your story. I have hs also and i understand what you go thru even thinking about suicide sometimes but its nice to know someone else in the world understands the struggle of our disease. I hope u do more videos
I'm so glad I found this. You are truly brave and honest and I can relate to you on so many levels. I first had a HS flare in my groin in my early 40's, it was on my private area and it hurt and when I saw it I almost fainted. Went to pcp and same thing happened to me, she had to Google it! Got the same line..."no cure, not much knowledge or research being done. After that I started having flares in my armpit, bottom of my scalp and even top of my head. I have been under extreme stress for months now, started getting pain in my left pit last week and I thought "uh oh". Sure enough, this morning as I was showering I felt a mega lump in my pit, got out and held a mirror up, there's a big nasty lump under my skin with the beginning of what will be huge before it pops. I have pain in my left breast too so I gather this flare is going to be a doozy. I have been having these for almost twenty years now, I always hope they will go away but they never do. I belong to a group at the pool of my local YMCA, when I flare I have to skip classes. I also want to mention I have Lupus slew and it is common in lupus patients, amongst others with immune system problems. God bless you, I hope things get better.
Van Gogo I've been having a lot of flares lately so I haven't really had any motivation to make videos. I want to make more tho as I've gotten so many texts like yours and I love the conversation it starts. I really hope the flare under your arm heals up, I've had 4 going on in my right arm pit for about a month now and I'm almost to my breaking point. I'm so glad you enjoyed the video ❤
@@BEAUTIFULTHING12 Thank you Jamie, my real name is Linda, "vangogo " is a nickname but I'm cool with either. Thank you for your warm reply, I certainly hope you post more videos. I don't have to tell you how hard it can be to meet and form some kind of support with kindred spirits, other people with HS, it does help to know others that are going through the same thing, because people who have never had it don't have a clue, which can do isolating. God bless you as you reach out to others this way, you are a brave, honest woman, the best kind to be!😊🤗🤗
I love your videos and can totally relate to the way that your feeling 🙎🙎 just subscribed but I am here in England your strong trust me 👊👊 you will overcome sending you support my way
hi i am 63 been having hs for 50 yrs now....gone for numerous times....did not help. just like you ithink of sucide too. i am so tired of it.have it on both armpits,grion and buttocks.i too experience the same as you.
I think your life would drastically improve by losing weight. I know so many ppl with HS who didn’t get flares from certain food - but, eating healthy HELPED them drastically. The weight loss helped with the sweat/skin rubbing. And the healthy food helped with the skin. Also, the reason doctors didn’t know about this, and had to google it, is because sufferers decided to keep quiet about it for years. This was thought to be insanely rare, until people finally came out of the woodworks. And thankfully they did because now doctors now how many ppl suffer from it
Imani Kerre-Mongi I didn't mean to scare you, sorry. I just really needed to vent is all. It can be scary but there are support groups that can help you find your triggers if yours is food related. Mines hormonal so there's not much I can do to control it at the moment unfortunately.
I do not understand why nobody knows that taking Selenium and magnesium followed by Epsom salt baths help cure this. This is due to the lymphatic system being plugged up. Only baggy cotton clothing should warn and able to bleach in hot water. During a flair up never shave and always treat with peroxide. Once the selenium kicks in give it a month and you will see. Also when the sores do drain it is actually very contagious that's why changing towels bedding and hand washing is key.
thank you. I've had it for 50 years and it still is a problem. I'm a nurse and I self diagnosed myself despite seeing many doctors. I now help patients that come in to have their abcesses drained surgically and even then they are told that just have an abcess and are not told what the real problem or diagnosis of Hidradenitis Supportiva. It's sad. i'm glad your helping to spread the word. Every little bit counts. Just like me. Hang in there. The worlds a better place because of people like you
Thank you for sharing your story. I have hs also and i understand what you go thru even thinking about suicide sometimes but its nice to know someone else in the world understands the struggle of our disease. I hope u do more videos
I'm so glad I found this. You are truly brave and honest and I can relate to you on so many levels. I first had a HS flare in my groin in my early 40's, it was on my private area and it hurt and when I saw it I almost fainted. Went to pcp and same thing happened to me, she had to Google it! Got the same line..."no cure, not much knowledge or research being done. After that I started having flares in my armpit, bottom of my scalp and even top of my head. I have been under extreme stress for months now, started getting pain in my left pit last week and I thought "uh oh". Sure enough, this morning as I was showering I felt a mega lump in my pit, got out and held a mirror up, there's a big nasty lump under my skin with the beginning of what will be huge before it pops. I have pain in my left breast too so I gather this flare is going to be a doozy. I have been having these for almost twenty years now, I always hope they will go away but they never do. I belong to a group at the pool of my local YMCA, when I flare I have to skip classes. I also want to mention I have Lupus slew and it is common in lupus patients, amongst others with immune system problems. God bless you, I hope things get better.
Van Gogo I've been having a lot of flares lately so I haven't really had any motivation to make videos. I want to make more tho as I've gotten so many texts like yours and I love the conversation it starts. I really hope the flare under your arm heals up, I've had 4 going on in my right arm pit for about a month now and I'm almost to my breaking point. I'm so glad you enjoyed the video ❤
@@BEAUTIFULTHING12 Thank you Jamie, my real name is Linda, "vangogo " is a nickname but I'm cool with either. Thank you for your warm reply, I certainly hope you post more videos. I don't have to tell you how hard it can be to meet and form some kind of support with kindred spirits, other people with HS, it does help to know others that are going through the same thing, because people who have never had it don't have a clue, which can do isolating. God bless you as you reach out to others this way, you are a brave, honest woman, the best kind to be!😊🤗🤗
You are brave. Thankyou so much for sharing , i dont feel so alone 🤗
I love your videos and can totally relate to the way that your feeling 🙎🙎 just subscribed but I am here in England your strong trust me 👊👊 you will overcome sending you support my way
hi i am 63 been having hs for 50 yrs now....gone for numerous times....did not help. just like you ithink of sucide too. i am so tired of it.have it on both armpits,grion and buttocks.i too experience the same as you.
I think your life would drastically improve by losing weight. I know so many ppl with HS who didn’t get flares from certain food - but, eating healthy HELPED them drastically. The weight loss helped with the sweat/skin rubbing. And the healthy food helped with the skin.
Also, the reason doctors didn’t know about this, and had to google it, is because sufferers decided to keep quiet about it for years. This was thought to be insanely rare, until people finally came out of the woodworks. And thankfully they did because now doctors now how many ppl suffer from it
Hello Beautiful!! I have HS also :( I have had since I was 15 yrs old, I am now 42 yrs old and still dealing with it
oh my god im scared... ive had it for 7 years now
Imani Kerre-Mongi I didn't mean to scare you, sorry. I just really needed to vent is all. It can be scary but there are support groups that can help you find your triggers if yours is food related. Mines hormonal so there's not much I can do to control it at the moment unfortunately.
I do not understand why nobody knows that taking Selenium and magnesium followed by Epsom salt baths help cure this. This is due to the lymphatic system being plugged up. Only baggy cotton clothing should warn and able to bleach in hot water. During a flair up never shave and always treat with peroxide. Once the selenium kicks in give it a month and you will see. Also when the sores do drain it is actually very contagious that's why changing towels bedding and hand washing is key.
First
Why don’t you go on birth control ?