#1 ·
Hey everyone! I’m 16, and I was recently diagnosed with SAPHO syndrome!
So, what does that actually mean? In my head, I picture it as three different issues rolled into one...
It affects the joints, bones, and skin. And yeah, I’ve got all three.
This whole thing started about two and a half years ago. It began with this unbearable, non-stop acne breakout on my back and face. I tried just about every medication under the sun, but honestly, nothing really helped. 😢
I felt like I saw a thousand doctors. Everyone had their own theory and prescribed something different because nobody could figure out what on earth was happening to me! Eventually, I started taking Accutane for the acne on my face, back, and chest. After a week, my left shoulder started hurting. I kept taking it since the side effects warned that stuff like that could happen in rare cases... okay, maybe not so rare. A week after that, my right knee started acting up too. At the time, I was convinced it was the Accutane, though I didn't know for sure. It was rough. I couldn't even walk properly; I was basically dragging myself to school and back every day. Between the constant pain, the bloody and inflamed skin, and the lack of sleep, it was exhausting. After bouncing between countless hospitals and being treated like a guinea pig by various specialists, I finally met a doctor who identified it as SAPHO syndrome. Everything lined up—the tests, the scans, the CT results—but I still can't wrap my head around how it took two and a half years to figure this out. 🤷
It’s been a struggle, and honestly, it feels pretty unfair. I don't even know how I caught this thing. :S There are periods where I feel great—my face clears up, and even though my back is covered in scars and occasional breakouts, my joints and knees work perfectly enough that I feel like I could run a marathon 12 miles... ! But then there are days when I can barely move a leg or even stand up. The pain is intense, and my face looks terrible, almost like I've been living through some disaster zone for twenty years. This has been my life for two and a half years now. I’m just hoping that now that we have a name for it, we can actually do something about it and find a cure. I'm just tired of waking up to bloody skin every morning or being stuck in bed for five or six days because I physically can't walk 😢! If anyone else here is dealing with this—since it’s incredibly rare—please reach out. I’d love to hear about your experience, how you managed it, if you found a cure, or how long it took for you to get answers 🙂. Also, please ask me anything you want to know; I could really use the connection right now. Thanks!
So, what does that actually mean? In my head, I picture it as three different issues rolled into one...
It affects the joints, bones, and skin. And yeah, I’ve got all three.
This whole thing started about two and a half years ago. It began with this unbearable, non-stop acne breakout on my back and face. I tried just about every medication under the sun, but honestly, nothing really helped. 😢
I felt like I saw a thousand doctors. Everyone had their own theory and prescribed something different because nobody could figure out what on earth was happening to me! Eventually, I started taking Accutane for the acne on my face, back, and chest. After a week, my left shoulder started hurting. I kept taking it since the side effects warned that stuff like that could happen in rare cases... okay, maybe not so rare. A week after that, my right knee started acting up too. At the time, I was convinced it was the Accutane, though I didn't know for sure. It was rough. I couldn't even walk properly; I was basically dragging myself to school and back every day. Between the constant pain, the bloody and inflamed skin, and the lack of sleep, it was exhausting. After bouncing between countless hospitals and being treated like a guinea pig by various specialists, I finally met a doctor who identified it as SAPHO syndrome. Everything lined up—the tests, the scans, the CT results—but I still can't wrap my head around how it took two and a half years to figure this out. 🤷
It’s been a struggle, and honestly, it feels pretty unfair. I don't even know how I caught this thing. :S There are periods where I feel great—my face clears up, and even though my back is covered in scars and occasional breakouts, my joints and knees work perfectly enough that I feel like I could run a marathon 12 miles... ! But then there are days when I can barely move a leg or even stand up. The pain is intense, and my face looks terrible, almost like I've been living through some disaster zone for twenty years. This has been my life for two and a half years now. I’m just hoping that now that we have a name for it, we can actually do something about it and find a cure. I'm just tired of waking up to bloody skin every morning or being stuck in bed for five or six days because I physically can't walk 😢! If anyone else here is dealing with this—since it’s incredibly rare—please reach out. I’d love to hear about your experience, how you managed it, if you found a cure, or how long it took for you to get answers 🙂. Also, please ask me anything you want to know; I could really use the connection right now. Thanks!