BEHCET'S DISEASE - Explained

[otakixus2]

Watching "Itoshi Kimi e" and it's about a guy with this disease and how he is trying to manage it in his everyday life and around the people he knows. There are other rare diseases like the XP disease (skin cancer) and I learned about it from Taiyou no Uta (TV series, Movie) and spinocerebellar degeneration disease from 1 Litre of Tears (TV Series, Movie). I never knew about these rare diseases and it's saddening to see they exist and there is no cure for them. :( ... We'll find a cure one day.

[latinqueen3777]

My mom was diagnosed with Behcets 15 yrs ago and is blind from one eye and almost blind from the other. It started with her eye sight that left her blind within the first yr of doctors trying to find out what was wrong with her.Through out the yrs she has had the joint pain and ulcers in her mouth but the disease has had an impact on her heart as well.Hope they find a cure for this in the near future..

[REMIX8604]

its good to finnally have an answer tho

[BabieGirl954]

I've done some research on this Disorder, and I know there's a LOT more information for me to find out about this Disease. Its sad to know the things that some people go through BEFORE they find out the ACTUAL condition that they have.

[Qla1320]

i have the curse too but i do feel a lil better to know im now alone. ive be dealing with it for 3 years now and it took all most a year of in and out the houspital till i got a doctor to help me

[PRAET0R1ANN]

I got them all in my mouth, I couldn't eat for 10 days, and I also got them around my penis, its fucking horrible

[lrodriguez198]

I'm 24 and I suffer from this horrible disease it all started 3 years ago. No doctor could tell me what I had. I put all my symptoms together and found it online. It depresses me so much, I take 6 pills a day to keep ok, but the mouth sores are insane like it never stops is one after the other constantly. And i feel so alone is like noone around me understands how horrible this can be. And not knowing if you are going to get worse with time. Is an awful feeling.

[robpleticha]

New Online Community in 5 languages for people living with Behcet's. Developed by EURORDIS, NORD, and European Behcet's patient organizations.

Check it by Googling Rare Disease Communities

[uchihaotoco]

If anyone would like to become friends with me on Facebook who have questions about this or want to talk please send me a message!

. I'm 20yrs old and have been suffering from behcets since I was 11 or 12. I don't know anyone the the disease and I really feel alone like no one understands the degree of debilitation that this can cause... Id just love to know a few people who have it.. :)

[OrchestralLULZ]

@uchihaotoco Hey there. my mother is a part of a Behcets board on facebook, personal message me if you would like to know more information :)

[lrodriguez198]

@uchihaotoco I feel the same way, is like noone understands how horrible it is to have this to not know what your future is going to be if you will be worse or better. :( Is just horrible to experience this illness.

[AmericanBehcets]

You can find out more aobout Behcet's on facebook at

abda.behcets

[parradiseacres]

@magentasim

I wanted to know more about ur disease! Are u in Facebook?

[alekxia100]

i was 15 when they said i had behcet's :(

[bulziproductions]

@alekxia100 me too! aka right now haha

[alekxia100]

my behcet went to my brain...

[KewkieXmonstr]

I'm only 12 and I have this. :\ I hate getting ulcers in my mouth they hurt alot. I can't really participate in gym because my bones hurt alot alot alot. This sucks too much. :\

[MagentaSim]

I had almost all of these symptoms and my family and I were actually praying for an answer when we saw tv show telling us what it was. Soon after that we saw a show that said they had a book containing info on it (will try to get the title) but the main point is:

[MagentaSim]

Neither of these are very pleasant at first but a small, small price to pay if it helps! Try it and let me know everybody

[MagentaSim]

DON'T KNOW IF THESE TIPS WILL HELP AT ALL BUT HAVE REALLY HELPED ME! I HOPE AND PRAY THEY WILL WORK FOR YOU TOO!

[MagentaSim]

1) STOP EATING TOMATOES! No joke. Including ketchup or anything else with tomatoes. I tried it and so much of the vascular swelling went away. They contain some chemical that opens the pores in your stomach or intestinal lining and lets in the infection.

2) DRINK BARLEAN'S GREENS on an empty stomach before eating anything else

[123456789Abbiem]

don't you pronounce it like 'besh-ays'.

[RengawOO]

Please help and donate whatever you can, I thank you in advance for doing so.

[MagentaSim]

This is NO JOKE! I have found major relief from my probable Behcet's symptoms and want to share this blessing with you, I hope it will work for you!

1)Cut TOMATOES and all tomato containing foods OUT of your diet. (They contain a chemical that opens pores in your stomach/intestine that lets the infection into blood stream, causing the attacks)

2)Eat vegetables and OR Drink a drink mix called BARLEAN'S GREENS on an empty stomach in the morning.

ANSWERED prayer for me! Hope this helps U!

[ShelbyInDallas]

I have BD as well and started to suffer from symptoms when I was just five years old, but I was not diagnosed until I was 19. Now I work on the net, others in support groups trying to create awareness for this rare, often life changing, disease.

[BurelPhotography]

My father was once thought to have lost his sight to proliferative retinopathy but later on was diagnosed an believed to lost it from behcets.

[SKay2261]

aktoyjumper....this is very real. Think before you speak.

[healthyandwealthyme]

thank you for this information, I also live with Behcet's disease, i live a full active life now since I have been dx and treated.

I take a lot of vitamin and vivix and now only have the rare outbreak however when I am tired I have go to rest.

I can be contacted on FB Adrienne MacDonald, I will be happy to share how i have managed this illness

[1nerdse]

This is weird. My symptoms haven't ever quite fit my diagnoses; the diagnoses have changed over the years. But...my entire family going back 3 generations had weird symptoms that no doctor seemed able to explain or diagnose. I think this might be the mystery ailment I've been asking doctors about - for years, I've asked what ties this stuff together. I'm so grateful for those who posted this info!

[aktoyjumper]

this is not real

[livinluxuriously]

@aktoyjumper send me your email and I can show you the HOLES in my face and mouth that have been there for THREE YEARS plus the 14+ BLEEDING urinary tract infections I had in under 12 months due to behcet's. New York state has determined me DISABLED after a team of SIXTEEN doctors agreed that this was my condition at 23 years old. I am also on heavy narcotics and the next step is chemotherapy to shut my immune system down before I go BLIND.

Go to med school for 8 years and come back. Asswipe

[carolwrape]

My daughter was diagnosed with Behcets when she was 11 years old. She has responded well to the medications but still has inflamation about 3 or 4 times each year. We are so greatful to the ABDA for getting the word out. If you are not a member, join.

[GingerGood1]

@carolwrape

Hi! After reading your comment, I wanted to ask you a few questions. My 12 year old son has a possible diagnosis of Behcet's Disease. How old was your daughter when whe first started having symptoms? What symptoms does she have? What is her treatment? Is she doing well with treatment? I would love to hear from you. It's good to have a diagnosis, but scary too!

[carolwrape]

Hi Back... My daughter was 11 years old. that was when the first serious sign showed up... a extremely bad sore in her privates. We sought our a gyn which diagnosed Behcets followed up with the same diagnosis from a refered Rheumatologist. She has mouth sores about 4x's a yr and achy joints. I am prevented by the character count from getting too in depth but, if you can find me on FB email me and we can speak more one on one. It is scary... I'm still scared especially when she has flare ups!

[GingerGood1]

Hey again! I would love to chat with you on FB. I tried a search this morning byt couldn't find you. My name is Ginger Doss Good. Would you be willing to find me on FB? Thanks so much!  I look forward to hearing from you!!!

[HaSOne]

i have BEHCET'S

[Brenedah]

The power of video, over radio, is the visual interface with the audience. Although the dialog in this video is informative, the patients look healthy. I'm glad to have a Public Service Announcement, it's just a shame we don't "see" the physical aspects of this disease. Perhaps the next video will interview patients with active inflammation who are bedridden, confined to wheelchairs, suffering with terrible lesions, or hospitalized from the more severe symptoms of this debilitating disease.

[McKyleLaw]

@Brenedah One of the things I resent most about Behcet's, is that it is largely, an 'invisible' disease. The symptoms are internal. We LOOK healthy, for the most part & in order not to get lost in the pain, we must try to keep a positive attitude... which ALSO helps make us 'look' healthy.

I've heard it said that folks w/ Behcet's are Masters of Disguise. Learn to live thru the pain - Not to depend on others - To maintain dignity & autonomy. I don't want to be a burden, constantly complaining.

[maryburke11]

Awesome, absolutely awesome. Great Job, wonderful!!!!