Behcet’s Disease Resources

Living with Behcet’s disease can be overwhelming at times. When you’re first diagnosed, it can be overwhelming all the time. Feeling like you don’t know where to turn for information and support only makes things worse.

Fortunately, you don’t have to feel that way any longer. This article has everything you need to find all the Behcet’s disease resources you could possibly want.

Getting Diagnosed With Behcet’s Disease

When you’re first diagnosed with Behcet’s disease (or any chronic illness), it can be hard to know what to do next. Common questions asked by people recently diagnosed include:

• Where can I learn more about Behcet’s disease?
• Where can I connect with others who’ve been diagnosed with Behcet’s?
• Is there somewhere I can ask questions about Behcet’s as they come up?
• Are there any organizations dedicated to Behcet’s disease?

If you or a loved one has recently been diagnosed, I want you to know something I didn’t figure out until years later: you’re not alone. When I was diagnosed with Behcet’s in 1997, I felt like the only person on the planet who had it. This was before social media and other more modern ways to connect existed.

As unfortunate as it is to get diagnosed with Behcet’s at any time in history, there’s never been a better time than now. Why? Because you’ve got the internet. While it did technically exist when I was diagnosed, it wasn’t anything like it is today. There was no YouTube, Wikipedia, Facebook, or any of the other sites we’re all familiar with in 2021.

So consider yourself lucky to have been diagnosed with an unlucky illness at a lucky time. Because most of the resources we’ll get to in a moment didn’t exist 20 years ago. But before we get to them, I want to mention one more thing. If you’ve recently been diagnosed and don’t know where to go from here, you may want to read my last article: So You’ve Just Been Diagnosed With Behcet’s Disease. Now What?

Behcet’s Disease Resources

These Behcet’s resources are in no particular order. While I’ve used all of them at one point or another (most of them I still do), you don’t have to. This is just to give you an idea of what’s out there. So let’s get to our list of Behcet’s disease resources.

Facebook Groups

I’m listing this one first because, for me, it’s been an absolute game changer. I know not everyone likes or even uses Facebook. But it’s allowed me to connect with other Behcet’s sufferers more than any other single platform.

In 2015, after years of being in more-or-less full remission, Behcet’s decided it was time to come out and play again. A series of severe blood clots in the deep veins of both legs had me bedridden for a couple of months that summer. It was during those months I discovered Behcet’s disease FB groups.

I was shocked to learn there are about 20 Behcet’s groups in all, at least 5 of them with more than 1,000 members each. Some have over 5,000. And they aren’t all just general Behcet’s groups. There are men-only groups, women-only groups, groups for undiagnosed and untreated patients, and more. Many groups are located in the United States but others are from the United Kingdom and other parts of the world.

In the years since discovering Behcet’s groups on Facebook in 2015, I’ve made a number of wonderful friends. Some of them I’ve met in person. Some I still talk to almost daily. More than any other single item on this list, FB groups have made me feel less alone and more connected.

In addition to making friends and connecting with other Behcet’s warriors, FB groups are a great place to learn and ask questions. The people in those groups are all very friends and more than happy to answer any questions you may have.

To find Behcet’s disease groups, simply search for Behcet’s on Facebook and click Groups. I’d suggest joining at least a few, since each group has its own flavor and focus. Here are links to a few FB groups, but there are lots of others:

• Behcet’s Disease: You Are Not Alone !
• Behcet’s Syndrome
• Behcet’s Men Only
• Women With Behcet’s

Reddit (/r/Behcets)

Reddit is a massive collection of forums divided by topic. These forums are referred to as subreddits. As of 2020, more than 2.2 million subreddits exist.¹ And one of those subreddits (/r/Behcets) is devoted solely to Behcet’s disease.

If you’re already a Reddit user, you should definitely check out /r/Behcets. Personally, I love Reddit and have used it almost daily for years. But it’s not for everyone. Like most online forums, there’s a lot of reading and writing involved. If your symptoms make it hard to focus or you just don’t like to do a lot of reading and writing, that’s totally understandable.

But for those of you who do like to read and prefer long-form written content, Reddit’s a great place to learn about Behcet’s disease, ask questions, and to connect with others.

The Behcet’s subreddit was created in 2015 by yours truly. During those long, hot summer months I was bedridden with the DVTs (deep-vein thromboses), I realized there was no subreddit for Behcet’s disease. So, I created one: /r/Behcets. Its subscriber list has grown steadily and now boasts over 600 members!

You can visit the subreddit here: /r/Behcets

Podcasts

Don’t like doing a lot of reading? There’s nothing wrong with that. We can’t all be book nerds like me! Another great resource are podcasts dedicated to Behcet’s disease, its patients, healthcare providers, and families.

If you’re unsure about what podcasts are, they’re spoken-word audio series that can be streamed from places like Spotify and YouTube or downloaded to your devices to listen to offline. But odds are, you already knew that. 75% of Americans know what podcasts are and 55% have listened to at least one.²

Personally, I love listening to podcasts. They’re a great way to consume information. Since Behcet’s disease can affect vision, ability to focus, energy levels, and more, reading isn’t always desirable or sometimes even possible for a lot of patients. Podcasts are a great alternative.

Unlike Facebook groups and Reddit forums which can be great for meeting others with Behcet’s, podcasts are more for informational purposes than social ones. They can be especially helpful if you’ve recently been diagnosed.

Since Behcet’s is so rare, it’s not surprising that only a few Bechet’s-related podcasts exist. And the ones that do are all fairly new. That being said, the existing Behcet’s-related podcasts are all great. Here are some that I highly recommend:

• The Behcet’s Disease Podcast
• Behcet’s Disease Uncensored (narrated by yours truly)
• Rising From The Illness

Behcet's Disease Uncensored (BDU) is a podcast to discuss this rare illness.

Behcet's doesn't censor itself when it attacks our bodies. So why should we censor ourselves when discussing it? 

Listen to BDU on Spotify or wherever you listen to podcasts. 

Listen Now

YouTube

While podcasts are popular, they don’t hold a candle to YouTube. I’m going to assume you’ve heard of YouTube because, well, it seems like everyone has. A whopping 74% of American adults use YouTube which is even more than Facebook.³

Of all the Behcet’s resources we’re looking at, this is the one I’ve used the least. While I use YouTube more than any grown man probably should, I haven’t really used it as a resource for Behcet’s disease very much. But just because I haven’t doesn’t mean you shouldn’t.

A quick YouTube search for “Behcet’s” turns out pages and pages of results. Some are from patients talking about their experiences with the disease, some from doctors talking about treating it, some from family members of people diagnosed with Behcet’s, and more.

If video is your preferred medium for consuming information, you could learn a ton from watching YouTube videos. Since I’m not familiar with any particular YouTube channels devoted to Behcet’s, I’m not going to list any. But just do a YouTube search and you’ll find plenty of content.

Behcet’s Organizations

Since Behcet’s disease is so rare, especially in the western world, there aren’t many organizations devoted to it. However, there are a couple worth mentioning.

The American Behcet’s Disease Association (or ABDA, originally the American Behcet’s Foundation) was created in 1978 by the mother of someone diagnosed with Behcet’s. Since then, it’s grown to become the largest such organization in the United States.

The ABDA website has a lot of valuable information, especially for new patients. They also offer free literature for doctors and patients. If you’re in the United States, check out the ABDA website.

For those of you in the United Kingdom, there’s Behcet’s UK (formerly the Behcet’s Syndrome Society). Behcet’s UK was created in 1983 by a nurse who’s also a Behcet’s patient. Their website is loaded with great information, especially for those of you recently diagnosed.

Several other countries have their own Behcet’s disease organizations. These countries include Germany, Italy, Japan, Korea, Portugal, Turkey, Chile, and Argentina. You can find links to these country’s sites here. And if your country doesn’t have its own Behcet’s organization, there’s the International Society For Behcet’s Disease (ISBD). However, the ISBD doesn’t seem to offer nearly as much as many of the other organizations. If your country doesn’t have its own Behcet’s organization, here’s the ISBD website.

Behcet’s Disease Books

When I was diagnosed in 1997, there were maybe 2-3 books about Behcet’s disease – that’s it. In the 25 years since then, a number of great books have been published. An Amazon book search for “Behcet’s” brings up 305 results.

While I can’t say I’ve real all of them, I’ve certainly read many. Some are about the disease itself written for patients. Others are also about the disease but written for medical professionals. Some books are memoirs written by people living with Behcet’s. Others by parents who have a child with the disease (or in at least one case, sadly lost a child to it).

If you’re like me and love to read, it’s a great way to learn about Behcet’s. Here are a few of my favorite Behcet’s books (linked to their Amazon pages) that I highly recommend:

• Behcet’s Disease (MyModernHealth FAQs) by Joanne Zeis – Loaded with easy-to-understand info for patients.
• Behcet Syndrome by Yusuf Yazici (ed.) – Packed with info for doctors, edited by a well-known physician and Behcet’s researcher.
• Ty’s Story: A True Story about Living with Behcet’s Disease and the Afterlife by Vicki Hamm – A sad yet beautiful story of a young man’s struggle with Behcet’s written by his mother.
• Finding Happiness Through Pain and Embarrassment: My Life With Behcet’s Disease – A Memoir by Ellis Michaels – Of course I’m including my book here! I tell the good, the bad, and the downright embarrassing about living with Behcet’s.

If none of those Behcet’s books jump out at you, just search for “Behcet’s” at your preferred bookseller to find plenty of others. But those are my personal favorites and highly recommend all 4.

PubMed & Other Databases

This one is geared mostly toward doctors, scientists, and other medical professionals. Well, them and nerds like me who actually enjoy combing through scientific databases. Since most professional and amateur science nerds should already be familiar with these, I won’t say very much here.

For someone like me, PubMed and other online databases are invaluable. They contain almost all published research from around the world. The downside is, they’re loaded with medical jargon which can be hard for most people to understand.

But if science, medicine, and other nerdy pursuits are your thing, PubMed is where it’s at. Use Sci-Hub (look it up if you don’t know what it is) to get around all the pesky paywalls and you’ve got the entire world’s collective scientific knowledge at your fingertips.

My Website

I don’t really need to mention this last place because you already know about it: you’re here right now. I’ve written several Behcet’s-related articles that are published in the Blog section of the Ellis Michaels website. And I plan to continue writing more in the future.

This website is for my Ellis Michaels pseudonym under which I write both fiction and nonfiction. In addition to using the website as a platform to promote my published works, I also use it to blog about whatever’s on my mind. Since Behcet’s is often on my mind as well as in it (along with the rest of my body), I’ve created a blog category specifically for Behcet’s and other autoimmune conditions. You can find it here: Autoimmune/Behcet’s Disease.

Conclusion

I hope this list of Behcet’s disease resources has been helpful to you. Feel free to share it with friends, family, healthcare providers, and anyone else you think could benefit from it.

In addition to all the great resources discussed above, I’m sure there are other places to learn about Behcet’s and meet others diagnosed with the disease. If you know of a good resource that I missed, please leave it in the Comments section at the bottom. And don’t forget to subscribe to the Ellis Michaels newsletter below.

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