Hello, my name is Jennifer. I am a 31 year old woman living with HS disease. I have so many hopes and dreams all planned out in my head. Maybe one day I can be pain free, Maybe I can help someone else cope with this horrible disease and maybe, just maybe, one day have my own business doing something I love! I wake up every morning with my mind ready to go, my day planned out but my body says “NOPE, lets lay here a while and let life pass you by instead” Since I can’t move I guess will chase my dreams tomorrow… if tomorrow ever comes.
This is my story…
I was diagnosed with HS when I was 24 from an ER doctor [later confirmed by dermatologists] 12 years after my symptoms started. I saw signs at 12 but I never wanted to talk about it. The pain from the condition is not easily described and can change. I’d describe it as:
Burning/feverish, Pounding with pressure, Shooting sensations, Electrifying, Throbbing, Sharp, Nauseating, Stinging, Paralyzing
Everything in life is a challenge when you have HS, things some people never think twice about. From the way you sleep, walk, sit, work, dress, shop, your love life, the way you fix your hair and your connections with friends & family! It emotionally breaks you down. I have been unemployed off and on for a year now. I was able to hold a steady job when the symptoms were mild but they continued to get worse. I started having too many ups and downs, and there were more downs than ups. The last job I had was in a call center relocating military families. Even this was a problem because I would have a mass the size of a tennis ball somewhere on my body at all times, with no break. If anyone wants to know what it feels like to suffer from HS, please get a tennis ball and place it anywhere on your body. (Under your arm, breast area, groin, thighs, stomach) Walk around all day or week with it and act like it isn’t there. Ignore the pain and still manage to smile! This is what people with HS do EVERYDAY.
People think we choose to let life pass us by or that we are lazy. Ha! Every day I fight to have a normal life. Some days I win, but most days I seem to loose. I fight every day, 24 hours a day.
I manage my HS by learning as much as I possibly can, and by paying attention to my body. I try and treat my wounds with different creams or essential oils. Doctors don’t always understand the disease, and I find myself having to educate them. So it’s hard for me to trust a lot of medication because I feel like I was more of a test dummy. They treated each of my symptoms separate. The biologic drug Remicade was given to me for HS but made me worse after I stopped using. I went from no pains or boils on Remicade and managing life to pretty much being bedridden for months and losing everything. All my body pains came back but they were worse. I couldn’t walk or move my arms much and had agonizing pains in my chest.
I am in stage 3 of HS, but I also have a very rare auto inflammatory condition called SAPHO Syndrome. I’m still learning about it though, because I only got that diagnosis a few weeks ago. SAPHO is an acronym for a variety of diseases or disorders.
S [synovitis is inflammation of the synovial membrane. An example of this is – joint pain/arthritis]
A [acne/HS-inflammation of the skin. Examples are pimples, blackheads or boils anywhere on body]
P [Pustulosis-inflammation of skin. Example: hands, feet, scalp have either peeling skin, blisters or flakes]
H [hyperostosis- pain and stiffness in the shoulder, chest, arm or knee possibly accompanied with loss of motion or problems swallowing or hoarse voice]
O [osteitis-inflammation of the bone. Example: pain in the bone]
If you feel you have symptoms, please talk to your Dr. about being tested. They say this syndrome is rare but I don’t think so. I just think doctors treat symptoms and never put the whole picture together. My hematologist was able to and so can many rheumatologists. Also if you have major fatigue, please have your vitamin B12 checked.
My kids also started showing signs of this ugly disease early on, and it makes me wonder how will their future be? A few family members would get a boil here and there but nothing like me. At the age of 5 my daughter got a bump on her thigh and I almost lost it. I cried for days. By the age of 10 she had them on her thigh and her bottom along with acne and black heads. She also has one shorter leg which are all symptoms of CRMO (chronic recurrent multifocal osteomyelitis), the juveniles version of SAPHO. My son also got a boil on his tailbone at 10. My worst fear came true when I found out I passed this horrible disease to my kids. I never wanted them to suffer.
Understand diet matters in everyday life for your health, but it is very important in managing HS. Natural is better is something I believe. I’m not saying go into shock changing your world but slowly make better choices in what you eat. A lot of the inflammation we experience is from the things we eat. Fruits and veggies are your friends, and you should go crazy with them. If you get mad or upset, you can have the bag of grapes and you don’t have to feel guilty.
Remember that you are not nasty or dirty! You are beautiful and you just have inflammation of the skin. Shower as much as possible, but this wasn’t created because you have bad hygiene, it gives you bad hygiene. Bandages slow down the healing process. Let them breathe as much as possible. Don’t let them get too bad or big. Go have it drained! The infection will make you sick and cause other medical concerns.
Also, don’t be scared to share your story, you may help someone else! Don’t be afraid to move forward without those people who don’t understand or support your journey in life. Positive vibes only!! Stress is a factor in a flare up. I know my life would be different without HS. I can’t dwell on what could have been though; I have to find my new normal and my new future!
Last but least I love you and never give up! You do have people here to support you!