I was diagnosed when I was 22 months old. I'm 38 now. I struggled with high fevers and still do. Lots of inflamation and the inflammation effected my heart. I'd end up with pericarditis and go into congestive heart failure. This happened about twice a year from age 5 to age 17. Unfortunately, thet didn't have as many med choices then and the only thing that worked for me was large doses of corticosteroids. What they don't mention is how those are harmful too. Because of them, my adrenal glands were destroyed, I ended up with brittle bones and cataracts at age 12. I had surgery at age 13. My left hip became destroyed at age 5 and I wore a Scottish Wright brace for 3 years. Didn't do much. I then had a full hip replacement at 20. A year before that, inflammation destroyed my right wrist. I had a full wrist fusion as the surgeons said it was like that of a 70 year old. I'm doing better now. I work full time and have a family of my own. Thanks in part to advancements in medicine. I still have issues and a lot of pain that I've learned to live with. I can say what's always hard for me is people don't believe it because I was so young. It's admittedly hard to keep my mouth shut at times when someone will openly yell at me for using a cane, parking in handicap (with plates). As if I chose this at 2 years old. It's given me a better perspective on what's important to me in life though and I appreciate that.
Really interesting! I was diagnosed last year after an extremely intense onset with HLH/MAS. Had a lot of similar experiences in terms of the diagnosis of exclusion - doctors still weren't 100% on Still's when they began treating me for it, but I was deteriorating fast so they had to make a decision. Thank goodness, they were right and it was Still's. Interesting that doctors refuse to believe you when you mention the diagnosis! My doctors/nurses are always surprised but don't refuse to believe me. I found a lot of groups on Facebook as well, most are great about not including misinformation and being pro science. I ALSO FOUND BREIKA'S LIFE! One of the few people on UA-cam talking about it! "Is is genetic?" Okay, interesting. I've been told there MAY be a genetic component but it's not well understood. I had a genetic panel done (my DNA was sent to the USA!) I was found to have several variations of unknown significance, and to be a carrier for an odd mutation on the AEIR gene, which regulates the immune system. My immunologist wasn't sure what any of this meant but it's interesting! I am extraordinarily lucky to have, most likely, developed the monophasic form of the disease, meaning it does not appear that it will come back. I am off meds now. I also was extraordinarily lucky that I never at any point developed arthritic symptoms. On the other hand ... I came nearer to death that anybody should be comfortable with. This disease takes so many forms and everyone's experience is so unique the more I read up on it.
Thank you so much for commenting Jack! I'm glad your doctors were able to figure it out it was so freaky in the beginning when no one had any idea. The dna testing is really interesting! I hope as more people are diagnosed they'll find some kind of common thing between us that will make diagnosis easier, quicker and maybe even a bit less exclusion based. Maybe with more knowledge they can come up with a better treatment plan that works more consistently. It really does take many forms and present in so many different ways it is such a strange condition, I like to be original so I guess my illness wanted to follow suit 😅. How long did the monophasic episode last? Did doctors listen to you right away? Don't feel like you have to answer these questions at all.
@@maggiemicdup My episode lasted around about three/fourish months. It was complicated because I had an allergic reaction to an antibiotic which made my symptoms reappear after I'd already been diagnosed and sent home. It kinda went like, got sick -> got sicker -> diagnosed -> getting better -> minor decline again -> getting better again -> all better now. When I first got sick, I went to the ED thinking I had a bad flu and was sent home with antibiotics as well. I just got sicker though so went back two days later and was admitted overnight. When they realised that antibiotics were doing jack shit and my fevers were cycling regardless of what meds they tried, that's when they started investigating further. I was transferred to a larger hospital in the city (had been in a rural-ish hospital before) and from there into the ICU as I was deteriorating due to the HLH/MAS. At that point the rheum team were 90% it was Still's, so they began treatment to prevent me deteriorating further - my ferritin levels were described as "deranged," peaking somewhere around 250,000. So, my doctors listened because they HAD to - my body was shutting down and I was in danger of permanent organ damage!
But is there a set of criteria that can tell u if it's coming back or not ? My brother has been recently diagnosed with this condition and I wanna know if which form of disease he has?
@@enf.j1830 sadly no, you just have to wait. Once I had been disease free for three years, my doctors officially said that I almost certainly had the monophasic variety. But even then, there are no guarantees.
@@jackainsley4365 thanks for replying I pray that u'll always be safe and sound 🙏 u were on steroids and methotrexate or some biological therapy ? And did remission happened quickly to all symptoms at one time after treatment or they started to improve gradually ?
@@thelmaparnell296 I used it to achieve remission with a disease called eosinophilic esophagitis, with no meds, and others have used it to achieve the same thing with almost any chronic disease you can name - ua-cam.com/video/JQTEXP2ihxA/v-deo.html
@@stacieforrester1308 oh no. Well I always look to see what I did different in life, diet, new home, medical/dental procedure to assess if symptoms started after some change. I had a whole bunch of systemic issues after getting a metal crown and root canal. Once I removed them all problems stopped. It took 1 year for me to trace it back to the dental work. I would never have guessed until I found published medical research on the topic. I went though hell for 1 year. Cried a lot, prayed to God for my life.
@@stacieforrester1308 yea. The worst part is doctors gaslighting you and not doing any research to help. I have to be my own doctor and tell them what to do
Mam my father is also suffering for this disease from seven months he is taking stayroids how many times my dad will need to be cure . I will die without my dad please help me give me answer 🙏 please please please 🙏 😢 😭
I was diagnosed when I was 22 months old. I'm 38 now. I struggled with high fevers and still do. Lots of inflamation and the inflammation effected my heart. I'd end up with pericarditis and go into congestive heart failure. This happened about twice a year from age 5 to age 17. Unfortunately, thet didn't have as many med choices then and the only thing that worked for me was large doses of corticosteroids. What they don't mention is how those are harmful too. Because of them, my adrenal glands were destroyed, I ended up with brittle bones and cataracts at age 12. I had surgery at age 13. My left hip became destroyed at age 5 and I wore a Scottish Wright brace for 3 years. Didn't do much. I then had a full hip replacement at 20. A year before that, inflammation destroyed my right wrist. I had a full wrist fusion as the surgeons said it was like that of a 70 year old.
I'm doing better now. I work full time and have a family of my own. Thanks in part to advancements in medicine. I still have issues and a lot of pain that I've learned to live with. I can say what's always hard for me is people don't believe it because I was so young. It's admittedly hard to keep my mouth shut at times when someone will openly yell at me for using a cane, parking in handicap (with plates). As if I chose this at 2 years old. It's given me a better perspective on what's important to me in life though and I appreciate that.
Really interesting! I was diagnosed last year after an extremely intense onset with HLH/MAS. Had a lot of similar experiences in terms of the diagnosis of exclusion - doctors still weren't 100% on Still's when they began treating me for it, but I was deteriorating fast so they had to make a decision. Thank goodness, they were right and it was Still's.
Interesting that doctors refuse to believe you when you mention the diagnosis! My doctors/nurses are always surprised but don't refuse to believe me.
I found a lot of groups on Facebook as well, most are great about not including misinformation and being pro science. I ALSO FOUND BREIKA'S LIFE! One of the few people on UA-cam talking about it!
"Is is genetic?" Okay, interesting. I've been told there MAY be a genetic component but it's not well understood. I had a genetic panel done (my DNA was sent to the USA!) I was found to have several variations of unknown significance, and to be a carrier for an odd mutation on the AEIR gene, which regulates the immune system. My immunologist wasn't sure what any of this meant but it's interesting!
I am extraordinarily lucky to have, most likely, developed the monophasic form of the disease, meaning it does not appear that it will come back. I am off meds now. I also was extraordinarily lucky that I never at any point developed arthritic symptoms. On the other hand ... I came nearer to death that anybody should be comfortable with. This disease takes so many forms and everyone's experience is so unique the more I read up on it.
Thank you so much for commenting Jack! I'm glad your doctors were able to figure it out it was so freaky in the beginning when no one had any idea. The dna testing is really interesting! I hope as more people are diagnosed they'll find some kind of common thing between us that will make diagnosis easier, quicker and maybe even a bit less exclusion based. Maybe with more knowledge they can come up with a better treatment plan that works more consistently.
It really does take many forms and present in so many different ways it is such a strange condition, I like to be original so I guess my illness wanted to follow suit 😅.
How long did the monophasic episode last? Did doctors listen to you right away? Don't feel like you have to answer these questions at all.
@@maggiemicdup My episode lasted around about three/fourish months. It was complicated because I had an allergic reaction to an antibiotic which made my symptoms reappear after I'd already been diagnosed and sent home. It kinda went like, got sick -> got sicker -> diagnosed -> getting better -> minor decline again -> getting better again -> all better now.
When I first got sick, I went to the ED thinking I had a bad flu and was sent home with antibiotics as well. I just got sicker though so went back two days later and was admitted overnight. When they realised that antibiotics were doing jack shit and my fevers were cycling regardless of what meds they tried, that's when they started investigating further. I was transferred to a larger hospital in the city (had been in a rural-ish hospital before) and from there into the ICU as I was deteriorating due to the HLH/MAS. At that point the rheum team were 90% it was Still's, so they began treatment to prevent me deteriorating further - my ferritin levels were described as "deranged," peaking somewhere around 250,000. So, my doctors listened because they HAD to - my body was shutting down and I was in danger of permanent organ damage!
But is there a set of criteria that can tell u if it's coming back or not ? My brother has been recently diagnosed with this condition and I wanna know if which form of disease he has?
@@enf.j1830 sadly no, you just have to wait. Once I had been disease free for three years, my doctors officially said that I almost certainly had the monophasic variety. But even then, there are no guarantees.
@@jackainsley4365 thanks for replying I pray that u'll always be safe and sound 🙏 u were on steroids and methotrexate or some biological therapy ? And did remission happened quickly to all symptoms at one time after treatment or they started to improve gradually ?
Thirty years later and I’m still battling
😮 have you ever heard of the carnivore diet?
@@JasonActualization no
@@thelmaparnell296 I used it to achieve remission with a disease called eosinophilic esophagitis, with no meds, and others have used it to achieve the same thing with almost any chronic disease you can name - ua-cam.com/video/JQTEXP2ihxA/v-deo.html
Did you recieve any vaccine or used some form of medicines/surgery/dental within a year prior of symptoms?
Could be vaccine side effects
My son received the J&J vaccine and started with symptoms 1 month later. Took 18 months to diagnose.
@@stacieforrester1308 oh no. Well I always look to see what I did different in life, diet, new home, medical/dental procedure to assess if symptoms started after some change. I had a whole bunch of systemic issues after getting a metal crown and root canal. Once I removed them all problems stopped. It took 1 year for me to trace it back to the dental work. I would never have guessed until I found published medical research on the topic. I went though hell for 1 year. Cried a lot, prayed to God for my life.
@@nesq4104 That is unbelievable! It is just terrifying to think of how many people go undiagnosed! You are in my prayers xo
@@stacieforrester1308 yea. The worst part is doctors gaslighting you and not doing any research to help. I have to be my own doctor and tell them what to do
Mam my father is also suffering for this disease from seven months he is taking stayroids how many times my dad will need to be cure . I will die without my dad please help me give me answer 🙏 please please please 🙏 😢 😭
Haven't his doctor tried to cut steroids off gradually ? Like to see if the symptoms will persist ?