Treatment For HS Autoimmune Disease

Hello,  First, I want to thank you for taking the time to read this. I understand life is difficult for each person, we all have struggles. So, I want to just mention that if you are unable to donate, then please feel free to simply share the page to spread HS awareness.   My name is Cathryn, I’m 25 years old from Belfast, Northern Ireland. I never thought I’d be in this position, having to ask perfect strangers for help, but life likes to throw us curveballs and well, here I am.   The reason I’m here, is to ask for help funding medical expenses for an autoimmune disease I have been diagnosed with.  It’s called Hidradenitis Suppurativa or (HS). This is something that affects around 1% of the population. It is incurable and progresses through different stages, the most severe being stage 3. These are pictures of the scarring on me at the moment, these are flattened out because of the antibiotics but this cycle of draining and filling again is what causes the pitted scars you can see, these images are on the inner thighs and under breasts. These sores have been recurring which points towards mine being at stage 2.  This is an image from online to give an example of where mine would progress to without help, to the final stage 3.  Hidradenitis suppurativa (HS) is a painful, long-term skin condition that causes abscesses and scarring on the skin. There is little information about the condition and its enormously difficult to treat. HS is life debilitating as it causes emotional stress, low self-esteem, pain that doesn’t respond to medication and distorted body image. I will link some more information about HS here – https://www.nhs.uk/conditions/hidradenitis-suppurativa/    I’d like to give some more information about me before I go into more detail, so this feels a bit more human. I’m a music student, I sing and I write poetry, I love being creative. I sometimes feel like I might be getting tested to see how much I’m willing to fight for what I want! The reason I say this is, well before I became a student, I suffered with severe mood swings and depression since I was around 11. I used music as medicine, I didn’t choose it, it just was the thing I knew I was supposed to do, it sort of chose me (as cliché as that sounds).  It turned out I was suffering from Bipolar Disorder for all this time, I sort of knew something wasn’t quite right but I was also someone who was desperate to break down the barriers it had created, so I could try and achieve my goals.  So, after a long time of being near enough house bound and ill, I managed to get a bit stronger. I wrote and released some music, I continued to write, I applied for jobs and courses. Then I was lucky enough to enrol in music college. This has been such a huge step for me, it’s helped me become someone with a purpose again.  I’m currently in college, I’ve been doing well, which is something I’m super proud of. I think I surprised myself, I didn’t think I’d ever `function’ right again. So, this brings me to where we are presently.  Some weeks ago, I was in pain and suffering abnormal bleeding, during this time I didn’t think too much into it, I sort of tried to continue without thinking about it. Then I was in so much pain that I ended up in the hospital. The hospital put me on several antibiotics but no one could tell me what was happening.   I got answers once I visited another hospital, I’d been dealing with an ovarian cyst, which had ruptured. This had caused the infections in the blood and the pain.   During the examinations for this, I was made aware of HS for the first time. I had suffered with severe acne over adult and teenage life, so I had assumed the sores I was experiencing were just the acne. Finding out that the sores and scars which have caused me such pain and emotional stress, are in fact an autoimmune disease, has knocked me significantly.  Considering I have been fighting with mental health for so long, I of course have self-esteem issues, I sometimes feel like it classes me as `damaged goods’, I know that sounds terrible but I think people will understand that. Having to deal with the mental side of things and making sure you somehow fit in with society is hard enough, so you can imagine I’m feeling quite upset about having something physically wrong now too, that makes me feel sort even more isolated and worries me about the future.  The condition affects me in 2 places, my inner thighs and under the breasts. These are painful and embarrassing. Presently I am at stage 2, I have spent so much on treatments and products over the years that have not had any benefit to the condition. I have become Vegan and adopted healthier lifestyle. It is not known where HS comes from or how to cure it, but I am trying anything I can to help myself.   I mentioned above that I’m trying to achieve my dreams of music and performing, having this condition makes that goal seem further and further away, as its affecting my confidence so much along with fatigue.  I have been told that treatment on the NHS for this, is considered cosmetic, however this is quite unbelievable as it’s such a serious condition. The go to treatment seems to be a life time of antibiotics which is quite frightening as that isn’t great for health reasons either. I am currently on antibiotics but no change. I have researched treatments for HS available to me in Belfast and I have found several options, but of course these are expensive as they are not funded through the NHS.  Putting together all the costs, considering removal of the glands, skin resurfacing and scar removal. The price range is around £4,000-£5,000. Considering all of this, and wanting to get better and more confident again to pursue my career and have a purpose, which I desperately need to do to keep on top of mental health too. I hope I have explained this properly and I hope anyone who reads this understands that I appreciate any help offered. I thought it might be appropriate to leave some links to the music and writing that I do, to let you see that I am trying to pursue this and as I said before, make it feel a bit more human. Poems-  https://shambamblesrambles.wordpress.com  Music- https://www.youtube.com/channel/UC-ZHW5yXtaS7M3X_vJSC7OA      Finally, I want to thank you for taking the time to read this and I want to thank you in advance for any help you can provide. Thank you so much, Cathryn.