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Hidradenitis suppurativa (HS) is more than just a skin condition. It is a chronic inflammatory disease that can cause painful lumps, abscesses, and scarring, most often in areas where skin rubs together, such as the underarms, groin, buttocks, and under the breasts.
HS can affect people of all backgrounds, but it most commonly develops after puberty and is more frequently diagnosed in women. Because symptoms are often misunderstood or dismissed, many people face delays in getting the care and support they need.
Every HS journey is different, and every story matters.
If you're living with HS, we'd love to hear from you. Click here: ow.ly/qWWU50ZkK9E or the link in our bio to get involved!
#HidradenitisSuppurativa #HSAWARENESS #chronicillness #patientadvocacy #PatientWorthy #invisibleillness #RareDiseaseCommunity #shareyourstory #PatientWorthy
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Hidradenitis suppurativa (HS) is more than just a skin condition. It is a chronic inflammatory disease that can cause painful lumps, abscesses, and scarring, most often in areas where skin rubs together, such as the underarms, groin, buttocks, and under the breasts.
HS can affect people of all backgrounds, but it most commonly develops after puberty and is more frequently diagnosed in women. Because symptoms are often misunderstood or dismissed, many people face delays in getting the care and support they need.
Every HS journey is different, and every story matters.
If youre living with HS, wed love to hear from you. Click here: https://ow.ly/qWWU50ZkK9E or the link in our bio to get involved!
#HidradenitisSuppurativa #HSAwareness #ChronicIllness #PatientAdvocacy #PatientWorthy #InvisibleIllness #RareDiseaseCommunity #ShareYourStory #PatientWorthyImage attachmentImage attachment+2Image attachment

From Jack and our friends Visual Snow InitiativeHi,I’m Jack, a 36-year-old living in the United Kingdom.

I have never been one for opening up. I am quite a private person, and putting myself out there is difficult for me. I have been inspired to do so by all the stories I have read through Warrior of the Week.

I was born with Axenfeld-Rieger Syndrome, a genetic condition I inherited from my father. I was born with malformed eye structures, including uniquely shaped pupils and irregular drainage systems. One symptom of ARS is congenital glaucoma. Glaucoma is a condition that affects the drainage of fluid from the eyes. When I was 19, the pressure in my right eye became uncontrollably high, despite being on the full range of medications. This is when I had my first glaucoma surgery, with a tube inserted into the eye to assist with the drainage of fluid. But when I awoke from this surgery, something wasn’t right. The tube had “worked too well.” The sudden and rapid reduction in fluid caused the eye to hemorrhage and the retina to detach fully. I have had no vision in my right eye since. I have since had two tubes fitted in my left eye without issues.

I was diagnosed with VSS in about 2020. I had always associated anything visual with ARS, glaucoma, and the trauma to my eyes. Thinking back on it, I may have been experiencing symptoms of VSS from quite a young age. I don’t remember ever seeing pitch black when I closed my eyes. It would always be a nebula of swirling colours. I have also had excessive floaters, ghosting, and starbursts for a long time.

I have always tried to have a “roll with the punches, get up and keep going” attitude when it comes to my visual health issues. But with VSS, it has been really tough to keep that mindset. It is always there, shimmering away. At home, at work, on days out with my daughter, and while playing football with the guys. It is relentless.

I have been aware of VSI for a few years now. They have done so much for the recognition and diagnosis of VSS. Their advocacy and continued research are great to see and give a lot of hope for the future of VSS treatment.

Our stories may be different, but we can be together in the experiences we share.
You are not alone.
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From Jack and our friends Visual Snow Initiative

New reports suggest that Attruby, a treatment for ATTR-CM, may also help preserve the kidney function of patients living with the condition. Read more here:

ow.ly/zRHG50ZlevF

#PatientWorthy #shareyourstory #ATTRCM #Attr #amyloidosis #attruby
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New reports suggest that Attruby, a treatment for ATTR-CM, may also help preserve the kidney function of patients living with the condition. Read more here:

https://ow.ly/zRHG50ZlevF

#PatientWorthy #ShareYourStory #ATTRCM #ATTR #Amyloidosis #Attruby
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