Dating and Behcet's Disease
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- Опубліковано 21 жов 2024
- Hi! My name is Ellis Michaels and I was diagnosed with #BehcetsDisease (aka #BehcetsSyndrome) in 1997 at the age of sixteen. In this video, I'm going to talk a little about #Behçets and dating.
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Such a relief to be able to find others online who have had Behcets. I was hospitalized for five weeks last year with pancreatic cysts. They got so big that it pulled the tube off that connected my pancreas to my digestive system. Had to be fed via a pick-line to slow weight loss, 66 lbs in three months. One thing I can say that has been super helpful is Plaquenil. I have chronic fevers, and Cleveland Clinic gave Plaquenil to me to help with that, but it also helped with ulcers. I still get them, but not so much in my mouth and down below. I do still get skin ulcers on my bum and scalp.
Anyhow, thank you for your candid UA-cam videos. Huge help!
I'm sorry to hear what you've gone through but I'm glad you've gotten some value out of my videos. I've heard from others with Behcet's that Plaquenil has helped a lot. Hopefully it continues to work for you. The CC is great. I know an RN that works there.
You are a Behcet’s cheerleader. I’ve was formally diagnosed in 2005 but struggled with symptoms starting in 1999.
Everything you talked about really hit home. I’m gonna have to listen to this video if I ever start dating again. Thank you thank you thank you 🙏🏻
And thank YOU for the kind words. I'm glad you've found some value in my videos. :)
Please don’t stop posting…I have watched all your videos and find them very informative/inspiring!
Thank you very much. I definitely plan on posting more videos in the future.
You are a real hero❤
Awww. Thank you!
Hey Allis, hope you are still doing good. Wondering if you’ve ever searched for aHSCT and if it is a valid option for your case? It is quite expensive but I’ve came across some studies that show good results for Behcet’s cases. Some of those who had it stayed in complete remission for long time.
I don't know much about it, honestly. And I don't know anyone with Behcet's who have tried it. But I'll do more research into it and maybe make a video about it at some point.
@@behcetsdisease good luck with that. The problem with Behcet’s is that it is rare although the way I see it it isn’t very rare but it is overlooked. This procedure has good results with MS. In case of Behçet’s, there have been around 9 who went through it and I think around 50% went into remission some for long time.
@@proudman6651 It certainly looks promising but, like I said, I'll have to do a real deep dive into the research before I can say anything for sure. But thanks for bringing it to my attention.
@@behcetsdisease good luck my friend. Wish you the best 🌷
Hope you are doing good warrior. It’s been more than two months when we talked here.
I'm doing very well thank you. Hope the same for you
@@behcetsdisease glad to know that. I had better days but I am fine. Wish you the best.
I would love some online support group to talk to people who have been through this
If you use Facebook, search for "Behcet's groups" and you'll find several with thousands of members. If you use Reddit, there's a Behcet's subreddit called "/r/Behcets" I hope that helps!
@@behcetsdisease I've definitely looked at your Reddit page, thank you for making it! I also have your book. Would you consider having a discord linked to your Reddit and Facebook? I personally don't use Facebook but I would love to chat with people and give/receive support in real time. If there is one then... I'll just be off now! P.s I can help in any way if needed
@@KP-hp3bg A real-time support group is a great idea. You're not the first person to mention something like that. I think it would be great but simply don't have the time to start it right now. I've shared the idea with the ABDA and they like it but I get the impression they don't have the resources (they're mostly volunteer) to get the ball rolling on that. Maybe you could contact the ABDA and tell them you'd be interested in starting a Discord group? I'd be happy to advertise it across the various platforms I'm on. But I can't be starting anything new right now: my time is spread too thin as it is. In the future, perhaps: I do think there should be a live support group.
Dr said i had neuro bechets pls sir help me you know when available gene tharapy for bechets pls sir help me nd pls researching for latest news about gene tharapy.i need your help pls sir 😢 😭
Gene therapy - for people like me and (presumably) you of limited resources - will probably take many years before it's available. The ultra wealthy are already using gene therapy for stuff. But for us with Behcet's, I wouldn't hold my breath. It's going to be a long time, probably longer than I'll be alive.
That being said: With CRISPR technology, the roadmap to a cure for Behcet's certainly looks promising. But it's years (decades) away unfortunately.
What u mean ultra wealthy are already using gene therapy means ???? Which gene tharpey? Is it bechets tharpey? Nd stem cell is safe?
Pls sir tell me bechets gene tharpey available for rich person soon??? How much time???
Sir pls reply I am waiting
Sir pls reply
Wondering if this man is doing well now.
I'm doing very well, thank you. And I hope the same for you :)
@@behcetsdisease glad to know it. My brother was just diagnosed with the same disease. I personally feel connected to everyone having it. They say in some cases with time it becomes less severe. Hope you are lucky enough to reach that and eventually reach a remission after all those years you lived with it. Stay well .
@@proudman6651 Yes, Behcet's disease often gets less severe in time. Hopefully that'll be the case with your brother. If he or you have any questions about Behcet's, feel free to message me. My name's Ellis Michaels and you can find me on FB, Reddit, UA-cam (obviously), or my website: ellismichaels.com
@@behcetsdisease I hope the same for both of you. thank you for responding and I will contact you in the near future.Wish you a long happy life 🌹
@@behcetsdisease hi Ellis. Hope you are doing well. I don’t wanna be a burden to you but you know there isn’t many to ask about this disease. I’ve learned from your website that you had multiple DVTs. My brother just had one a month ago on his leg. I understand recurrence is common with Behcet’s. Would be helpful to know how did you manage to exceed it. What medications you were put on and did it help to prevent clots to reoccur. And now what medications you are on and how is the disease treating you. Hope I am not bothering you.