Jasmin’s Chronic Battle with Behçet's Disease and How She Learned to Cope 

Mouth ulcers alone not enough for the diagnosis. I really hope you do not have this disease.

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?

Watch this video around the 22:57 mark ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-rG_9lu7fZ1Q.html

Hi honey. Wondering what ended up happening! I have bechets syndrome as well.

I think i'm facing it, now

Same to me

Watch this video around the 22:57 mark ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-rG_9lu7fZ1Q.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 .

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?

Thank you! ❤ Sorry I haven't been in touch but here's my RU-vid acct so we can catch up 🙏🏽

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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 ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-rG_9lu7fZ1Q.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.

Watch this video around the 22:57 mark ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-rG_9lu7fZ1Q.html

Watch this video around the 22:57 mark ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-rG_9lu7fZ1Q.html

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 ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-rG_9lu7fZ1Q.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

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!

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

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.

Watch this video around the 22:57 mark ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-rG_9lu7fZ1Q.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

Hi Souleiman! I'm Jasmin from the video. How can I help?

Is there a good dieet ?

That caused a MAJOR problem for me, that took MONTHS to heal

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

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.