Jasmin’s Chronic Battle with Behçet's Disease and How She Learned to Cope
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- Опубліковано 5 лют 2025
- Jasmin’s symptoms started when she was five years old, but because most of them were so common - ulcers, ear infections, migraines - she was diagnosed with Behçet's Disease when she was 24. She was relieved when she heard her diagnosis, because it showed her that her symptoms were real and not imaginary. Jasmin has learned to deal with daily pain and neurological effects and is now paying those lessons forward to other patients, caregivers, and advocates. Visit www.ascp.org/patients to read more about Jasmin’s journey and to meet our other Champions
I have a similar story. I got oral ulcers at five, and it has gotten worse and now I’m 24. I’ve had over 100 mouth ulcers in a year. They’re so painful. My rheumatologist believes it’s Behcet’s. Your story really means a lot to me and I hope all goes well
Mouth ulcers alone not enough for the diagnosis. I really hope you do not have this disease.
Wow! So happy you're diagnosed with it. I am..11 and I am in the middle of being diagnosed the behcets. I have all the symptoms and they started when I was 4 years old, I find that going wheat and gluten free can help! Wishing you the best and for whoever else is fighting this terrible chronic autoimmune disease xx
Watch this video around the 22:57 mark ua-cam.com/video/rG_9lu7fZ1Q/v-deo.html
Hi honey. Wondering what ended up happening!
I have bechets syndrome as well.
lovely video, I have had behcet's syndrome for over 20 years I am on a biological that seems to help, it is a cruel painful syndrome but with care support and the doctors it is bearable, I am under the combined behcet's centre of excellence at the royal london hospital, I wish you all the best take care x
The lady in this video is very lovely and helpful. I managed to have a brief talk with her on another application. I really wish her all the best .
Thank you! ❤ Sorry I haven't been in touch but here's my UA-cam acct so we can catch up 🙏🏽
It took a year for the doctors to Diagnose me with Behçet’s disease , I was looking up my symptoms online and I knew before they said it, that I had Behçets! Hope you’re doing okay 💕
I think i'm facing it, now
Same to me
Watch this video around the 22:57 mark ua-cam.com/video/rG_9lu7fZ1Q/v-deo.html
How are you doing now?
It took me 5 years 20 years ago . It’s rare and I’m in a even smaller group that has it as bad as I do ! But drs made me think I was crazy ! Guess what I wasn’t .
Have had different symptoms for months and finally went to the GI. After explaining my symptoms, she immediately said she thinks it’s Behcets’. I didn’t even know this existed. Now i have so many tests to get through to get the diagnosis.
I also have Behcets, and im 14 and i was diagnosed at 10 years old. I still can’t be on remission and i don’t have a good life, everything falls apart for me. The doctors told me i would be better in a year but now it has been 4 years and i have just gotten worse.
No one believed me before i got diagnosed and once a doctor told my mom when i was staying in the hospital that “you should take your daughter to a therapist because i think she’s making up feeling sick for attention”
The irony in this story is that Behcet's disease could arguably be one of, if not, the deadliest chronic illness on the the face of the earth. Luckily however, this condition is usually between 0.1-5% of how severe it could be theoretically speaking. Furthermore, the are medications and diets that can bring this illness under control. But of course, this story just goes to show, if they can't find your condition in a lab test then, unfortunately, they can't diagnose you.
I also have bechets i was diagnost at 13 and am 32 and I also have noonas symdrom is a battle every day girl u can have a friend in me
Hi I was diagnosed at 14 and I’m 17 now, I hope you’re keeping well please reach out to me if you want someone of the same age to talk to about it!!
@@aimie2353 hiii I was diagnosed at 13 too and am 32 but I have been having this sence I was 1 year old so pretty much all my life and am still getting used to it and I have really bad health right know I have really bad pain in my stomach and it seems I have something really bad 👎 and am scared this is my email apoohlover1212@yahoo.com
@@aimie2353 me too I'm diagnosed when I'm 15 and now I'm 18.. I've been taking steroids and gaining so much weight and I didn't feel comfortable... is this happening to you too?
Yall are so amazing! Thank you! ❤❤❤ We have Behçets, it doesn't have us!
I’m so relieved right now. I have been researching for YEARS & now I think I solved this. In Boston - where we supposedly have the best medical care in the WORLD - but somehow no one could bother taking me seriously - just pass me around specialist to specialist. I’m done taking this from doctors - I am going to bring my boyfriend, and mom in with me too. Maybe then they’ll take me seriously..even though I’m a 38 year old woman - not sure if my adhd meds were masking some symptoms for a while or if i went into a remission but ugh relief. Literally making my appt now.
Let us know how it goes! Doctors will have you believing it's all in your head and you're crazy but YOU know your body better than anyone!
As a 50something year old woman I had absolutely given up on specialists- we live in a rural community and specialists are more than a 3 hour drive away. I went to them all, they dealt with symptoms I had but I gave up on going to them it was never any real answers. I didn’t expect a diagnosis when I went to the new local doctor we got.. he sat with me for an hour and a half. He had studied my chart prior to seeing me in our local clinic and I walked away knowing there might be an overreaching diagnosis. I have 5 of the symptoms for the diagnosis before I even going to the eye specialist.
How were your ADHD meds masking symptoms?
Jasmin....I can’t believe I just saw this video! You did an amazing job! I can’t believe how many of our symptoms are so similar!
Watch this video around the 22:57 mark ua-cam.com/video/rG_9lu7fZ1Q/v-deo.html
Thank you for sharing your story!
great video ! You are a beautiful woman, and its uplifting to see your attitude towards your disease. I liked your video .God bless
Thank you for sharing your amazing story. I am facing with Behçet's disease as well. I got uveitis retinal vasculitis at 15 and now I'm 25. My ophthalmologist believes that it's Behcet's because they always check my body, blood cells both red and white, even my organs, all things are normal except my eyes that they didn't know how it happens. I spent my youth at hospital, got treatment every 2 month, took medications more than 5 pills in different types everyday. However, now I decided to studying aboard even this disease still appears. Someday I will be blurred person due to this disease, so if I have any chance to do what I want, I will grab this and do before I cannot. Your story really means to me and I hope anyone who faces with this disease goes well.
I'm so happy that my story was able to help you! And I admire your determination to still live out your goals no matter the odds. The doctors gave me similar prognosis, now here I am at 37 still chasing dreams. Take care of yourself and I wish you the best 🙏🏽
I am really interested in meeting others with this condition. My 14 year old son was diagnosed 3 years ago and we are having so many issues with trying to deal with it. If this comment reaches anyone with some insight on how to deal with this condition please respond to this
See a rheumatologist to help! I also have it and been taking this certain medicine every day since I was diagnosed and never felt better!
Watch this video around the 22:57 mark ua-cam.com/video/rG_9lu7fZ1Q/v-deo.html
I was diagnosed with it at 22. I was losing vision and they didn't understand why. Uveitis was my only symptoms. After 2 years or trialing different failing immunotherapies, they finally found something to control the inflammation. They put me on Humira, a very strong new immunosuppressive medication. This controlled all further flares ups for the last 7 years and I have lived a normal happy life. I can still see fine. Make sure you have 1 specialist looking after your son that will know him back to front. Document the changes daily so you can reflect back. Your son can still live a normal healthy life, he just is going on a long journey. Let me know if you have any questions
@@terryhatzimagas7313 unfortunately Humira isn’t always available. In many countries they’ve switched to different medications either due to lawsuits against the manufacturer or due it’s high cost. In many countries insurance doesn’t cover it.
@@terryhatzimagas7313 I have bechets no Medina can help in this dieses??? Is it true pls reply me.
Jasmin!! So well articulated. So glad you’ve been able to tell your story.
Watch this video around the 22:57 mark ua-cam.com/video/rG_9lu7fZ1Q/v-deo.html
I really think this is what I’ve thank you for your story
Watch this video around the 22:57 mark ua-cam.com/video/rG_9lu7fZ1Q/v-deo.html
Im new to the behcets world and its confusing. Because im so scared of a flare up i have a question. For those getting infusion treatments (biologics/infleximab) do flare ups still happen? I just got off of prednisone and only getting infusions so im just scared now that symptoms will come back. You all are amazing for going through this journey! ❤
Hi Caitie! Thank you so much! When I was on biologics, I did still have flare ups but less severe. And the first 48 hours, I felt horrific! But Remicade was my best experience! I hope it works for you!
Hi can you help on What diet restrictions have to follow if we have bechets's disease?
For those having Behcet’s, can you tell how long it usually takes between flare-ups?
i had it every day until corticosteroids therapy. now when im on mediication (high doses of steroids) i have none. but steroids come with a lot of negative side effect
@@wotekm3003 that must be hard. what symptoms you have and don’t use any other medication with corticosteroids?
@@proudman6651 i have all when im off steroids, urcels, skin sinfections, eyes infections, joints etc. i take only steroids
@@wotekm3003 sorry to know you have all that. You must be young for the disease to be that active. Hope you a fast recovery. I know cure isn’t there but you may consider immunosuppressants. They suck and come with side effects package but you can’t be on steroids for long time.
@@proudman6651 im 22 and for 3 years on steroids
Any of you begin the process with a rheumatologist to find out what’s going on with you and gotten results of HLAB 07 and 39? I still haven’t gotten an diagnosis yet. But I would like to know if anyone seen this and what happened next.
The rheumatologist was the last dr I got to before my diagnosis but that is the best place to start! Depending on your symptoms they will rule out everything else. Unfortunately there's no lab tests to confirm Behçets, it's usually diagnosed based off of ruling out everything else and your symptoms.
Most are like me if in an HMO, passed from doctor to doctor and told you most likely have a form of vasculitis but only rheumatologists can make the diagnosis. Go there, get told all kinds of ignorant stuff. Suffer with it for 30 years being given steroid drugs to control it and still no diagnosis. I’ve had every Behcets symptom blisters everywhere depending on the episode, eyes, internal bleeding, bumps blood blister in the throat etc. Doctors don’t like to diagnose rare conditions
I eat Keto and sometimes Carnivore diets.
As soon as I have some Wheat I get ulcers on my tongue overnight.
Let me know if anyone else has experienced being problem free with the elimination of Wheat.
Sounds like celiac sprue.
As soon as I have wheat I get ulcers aswell
Just got diagnosed with behcets this week
Watch this video around the 22:57 mark ua-cam.com/video/rG_9lu7fZ1Q/v-deo.html
I have similar symptoms, not officially diagnosed but keto makes it better. as soon as i come off keto diet symptoms come back
Keto is my strongest weapon. I'll be taking humira soon
Hello you can help me I suffer from behcet disease
Hi Souleiman! I'm Jasmin from the video. How can I help?
Is there a good dieet ?
My materal uncle has recently been diagnosed with behcets he was prescribed with corticosteroids and immunosuppresants by rheumatologist and he was doing well but as soon as the doses of the steroids went down he suddenly had the disease attacked in his digestive system and he had to get operated for it and doctors didn't told us anything about diet and all but can wheat and gluten cause this diseases flare up?? If anybody knows please let me know do he needs to stop eating wheat as i know tht autoimmune diseases that cause inflammation get worse with wheat intake as it contains gluten???
Hi there! I hope your uncle is doing better. Gluten definitely triggered flares with me and changing my diet helped significantly. I also had the same problem with the steroid taper so now I'm on a constant dose for management.
I am a patient of bahcets syndrome...I am 17 years old and I am taking steroyeds since 2015 for this .Then I was only 12 years old.. I am suffering with ulcers, skin disease, joint pain . My all organs has been damaged..my growth has been stopped. I am only 4ft highted. And my hormones are blocked..that I am now totaly without growth and immune system.
This syndrome doctor has recognized on me last year 2019. And I don't know how would I be cured..!!
Please some one advice me that I would be cured and my growth starts again..🙏🙏
Watch this video around the 22:57 mark ua-cam.com/video/rG_9lu7fZ1Q/v-deo.html
Hope things went in the right direction?
Hormones issues might be due the extensive use of steroids. Sorry brother. Hope you are fine now
❤❤❤
It’s crazy .. I thought I was the only one ❤
Not at all! You're not alone, we're out here!
What medications do you have after diagnosis ?
Currently I'm just on prednisone to manage it, but I've been on biologics, cyclosporine, Imuran, methotrexate, otezla, thalidomide... Probably every available treatment out there lol
Please can someone tell me if it’s safe to get waxed down there 👇 having bechets
That caused a MAJOR problem for me, that took MONTHS to heal
What happens when you have no one ?
speedv12 what do you mean by that (I have Behçet’s
How do you cope ? What you have is so difficult because people cannot physically see you have an illness so they don't undestand and most doctors don't get it either .
speedv12 it really depends, I was diagnosed with Behçet’s no to long a go. If you think you have Behçet’s try talking about this with your doctor. Only talk about it if you have the symptoms though (12 ulcers in the mouth at the one time, ulcers in other places,strokes or lightheaded, can’t move your body,terrible ace/pimples on back and other places) bare in mind it’s very unlikely your have Behçet’s if you only have one symptom. I get you no one can feel the pain your going through and that is one of the hardest things I was struggling with bc lots of people get a mouth ulcer from time to time but no one knows what it feels like to have 15 in your mouth at once. I’m still on the way to get better. Have you been diagnosed with Behçet’s yet??? Let me know.
P.S if you have anymore question you can ask me as I know a lot of stuff about my rare disease :D
@@countingcanary3856 I've just been diagnosed, what hurts the most is knowing that the pain I'm going through I will probably have to suffer for the rest of my life
You have us! You're never alone.
BARTONELLA