I’m 41 yr old and been living with incurable, painful autoimmune skin condition called
#Hidradenitissuppurativa. I was clinically diagnosed only in 2016 after battling with this for 25yr. For the past 25 yr I had 21 surgeries (#insicions) and #drainage. I remember one time I landed up in ICU where Dr did not know what I had and had major surgery where I was unable to move much for 3 months. I’m currently a patient at Groote schuur where Dr are still doing research for a cure. I’ve been on so many medication and still it does not help.
🙁 my biggest fear is knowing it’s time for surgery, I’m so afraid lately of the theater
table, needles and the plugging of my wounds. It takes weeks for the wounds to heal and daily care,Especially the pain. I lost job about a year ago and been battling even more as stress does not help and I’ve had flare ups every other day. At times I’m unable to get out of bed as this condition is so painful and exhausting and I don’t want to move at all. Right now I have flare up on my left arm and I try to minimize movement. As I right my story my tears roll down my cheeks hoping that one day soon I’m able to do my daily chores without pain without discomfort. And able to help my children as I see in their eyes at times that they too hope I’m able to do things with them when I can’t.
I was afraid for many years to speak out but I realized I could help others like me and I could be supportive and encourage them to not give up hope that we will get
a cure. I hope that a Dermatologist could take this condition and really make it
of high importance to HS patients to find a cure we need your help, we need your time to take on our battle. We living our lives in constant pain, loss of jobs which means difficult for funding medication and timeously medical care at state hospitals which can only help to certain extent and at the end loss of hope in ourselves to live normal life. I want to thank my mom and my children who is my biggest and greatest support in my life thus far, without you I would not be able to smile.