VF Disease Insights: Behcet's Disease

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VF Disease Insights: Behcet's Disease

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What is Behcet’s Disease? 3:38
How rare is Behcet’s Disease? 4:17
Why is it called the Silk Road Disease? 5:01
What is the cause of Behcet’s Disease? 7:21
Mouth ulcers and how Behcet’s Disease frequently first manifests in patients. 9:01
Delayed diagnosis of Behcet’s Disease is a major challenge. 10:25
How is Behcet’s diagnosed? 12:51
Management of Behcet’s Disease. 13:59
Alan story of Behcet’s Disease. 17:02
Dr. Suclich’s response to Alan’s story. 25:39
Beth’s story of Behcet’s. 28:39
Q: Is there a difference in how men and women are affected by the disease? 37:12
Q: Is testicular pain typically a part of Behcet’s for men? 38:59
Q: Do many Behcet’s patients experience pain and neuropathy? 41:24
Q: Can Behcet’s cause dental issues in addition to mouth ulcers? 43:38
Q: How has COVID been a factor in treating your Behcet’s patients? 45:40
Q: What significant research is being done on Behcet’s Disease? 50:20
Q: How does one deal with genital and skin ulcers that occur especially if you’re dating or in a intimate relationship? 53:30

Пікірлер: 32

@MsLbriley Жыл бұрын

I have every symptom! Continuous 24/7 mouth ulcers for 4 years now, RA, PSA. Have been treated with all medications…. Nothing has worked. My vision is going, balance, hypersensitivity to light noice and crows. Extreme anxiety and panic attacks … skin cancer and so much more. I feel like I’m actually dying a lil bit everyday . I have begged all doctors that treat me …. To please help me! It’s a shame when a patient has to beg …. Have calls the Mayo Clinic , the Cleveland Clinic and others …. They don’t accept insurance? And want a 10 k down payment???? Who can afford that ! What a disgrace it is to have to pay money to live …. Dying in Atlanta Ga .

@davidsavage6227 Жыл бұрын

Behcets has damaged my brain, endocrine/exocrine systems and pancreas. Was hospitalized for five weeks last year. Really need to get with the right people before this thing kills me. Thank you for posting these videos!!

@vasculitisfoundation Жыл бұрын

Please reach out to the Vasculitis Foundation's patient support coordinator. She can help direct you to medical providers in your area as well as help connect you with other people who are living with Behçet's. You can reach her using this contact form: www.vasculitisfoundation.org/about/contact-2/ We also have virtual support groups which are another great resource for information. www.vasculitisfoundation.org/virtual-support-meetings/ If you sign-up for our Enews letter you will receive information about in-person conferences, informational webinars, etc. www.vasculitisfoundation.org/subscribe-to-vf-e-news/

@bunthakim1141 Жыл бұрын

Thank you for sharing knowledge of behcet disease. That is very useful for me.

@dalaniekolakowski181 2 жыл бұрын

I got one shot of Moderna vaccine & it flared up my body.......it was terrible!!!!! Swollen tongue, heart racing, veins swelling, shaking, chest pains. No way was I taking the second shot.

@davidsavage6227 Жыл бұрын

Five weeks in hospital last year with pancreatic problems, fed via IV to stop weight loss. I lost 66 lbs in three months.

@vasculitisfoundation Жыл бұрын

So sorry to hear that. We hope you have found these videos to be educational. You can find additional resources, including virtual support groups, on our website www.vasculitisfoundation.org and you can subscribe to our Enews to receive monthly emails with information about events, research, and more www.vasculitisfoundation.org/subscribe-to-vf-e-news/

@davidsavage6227 Жыл бұрын

My pituitary gland quit working. Surgeon was able to determine that the failure was a result of loss of blood supply.

@marilynrogers6450 7 ай бұрын

I live in Chicago

@vasculitisfoundation 6 ай бұрын

The VF held their most recent international vasculitis conference in Chicago this past July. Everyone was so friendly and welcoming. If you have questions about Behçet's or other forms of vasculitis you can find helpful information and resources, including information about online support groups, on our website www.vasculitisfoundation.org/

@citomp1240 2 жыл бұрын

Does exercise and diet help or hurt??? I've asked this several times to doctors and they refuse to answer.

@marilynrogers6450 7 ай бұрын

Hello. My name is Marilyn. I was diagnosed with Behects after I had my son. I was 18. Six months after I had him I became ill. It took year to figure out what was going on.

@vasculitisfoundation 7 ай бұрын

We are so sorry it took so long for you to receive a diagnosis. We hope your Behçet's is controlled now. If you'd like to connect with others living with vasculitis we offer virtual support groups and also have an online chat community. You can find out more about these and other resources here: Support Groups www.vasculitisfoundation.org/virtual-support-meetings/ Inspire Vasculitis Voices Community www.inspire.com/groups/vasculitis-voices/ Find out about upcoming educational webinars, in-person conferences, and the latest vasculitis research by subscribing to our Enews www.vasculitisfoundation.org/subscribe-to-vf-e-news/

@imratsinghsingh7701 Жыл бұрын

Ise disease m smoking or alcohol drink ya problem hoti h k

@davidsavage6227 Жыл бұрын

Elidel cream helps with my skin ulcers.

@vasculitisfoundation Жыл бұрын

We're so glad to hear that the Elidel cream worked for you.

@davidsavage6227 Жыл бұрын

How do you get IVIG therapy approved by insurance?

@vasculitisfoundation Жыл бұрын

You will need to work with your medical provider to provide documentation to your insurance company as to why this treatment is necessary for you. The most important piece of advice we hear from others in the vasculitis community is to be the "squeaky wheel" with your insurance company. Appeal their decision if they do not approve it, and if necessary, contact the insurance commission office for your state.

@JOHNNYHAULAWAY 2 жыл бұрын

I have the mouth sores. I have the joint pain. Lethargic.. Headaches.. Leg lesions… At 45 I got a blood clot. Now 48 I’ve had 5 painful clots in my legs.. blood thinners are not helping. I think it’s Behcets?? Tho no doctor has been able to help. I can’t get into a rheumatologist bc there are only a couple here in Reno NV, and they are booked out over a year. Any advice?

@Theendlessriver77 2 жыл бұрын

My mom was recently diagnosed with Beycets. It was 100% caused by the Covid vaccine. She didn’t believe me when I suggested it but after her third booster she got a horrible flare up with painful mouth sores and pain in her legs. You need to see a Rheumatologist.

@infocus2160 2 жыл бұрын

I am also Bechets patient. Please go to doctor as soon as possible to confirm whether you are a Bechets patient or not. So that they prescribe you immunosuppressants or any other treatments suitable for you.

@citomp1240 2 жыл бұрын

Wake Forest in Winston Salem NC. Dr. Jorrizo dermatology. He has wrote chapters for medical journals about Bachet's.

@saadiich3127 2 жыл бұрын

@@infocus2160 how to treat it please tell me

@proudman6651 2 жыл бұрын

@@saadiich3127 unfortunately there is no cure for it. Medication controls the symptoms tho. I urge you to see a doctor if you have it.

@citomp1240 2 жыл бұрын

The why do I have it? I have no genetic relation to what you describe.

@rockydarnell2746 10 ай бұрын

Genetic is not the same as hereditary