'The most helpful place': Austin nonprofit builds community for people with rare diseases

Austinite Ben Munoz was 29 years old in the summer of 2006 when he had a bad headache along with dizziness and vomiting. Living in Dallas at the time, he drove himself to the emergency room with one hand on the steering wheel and the other hand holding a plastic container for him to vomit into.

"I got there really fast," Munoz said.

Within a couple of hours, he was in surgery. Munoz had an arteriovenous malformation, or AVM. It's a tangled mess of blood vessels that disrupts normal blood flow. It can happen anywhere in the body. The National Institutes of Health estimate less than 1% of people have an AVM.

In Munoz' case, his was in the brain and it had ruptured, causing a brain bleed.

"This AVM came out of nowhere," Munoz said. Even though an AVM is something people are often born with, "it had never showed up on any scans," he said.

Munoz, who was in business school at the time, searched for answers and for people who had the same condition he had. "I still needed procedures, and I couldn't find a support group," he said.

He put his background in software to work and created a website, avmsurvivors.org, with a message board for people to connect. He asked friends and family to sign up and spread the word. That message board grew to 50, 100, then 250 people.

Friends started to reach out about other rare diseases for which they wanted to have a message board. Soon there were boards for chronic facial pain condition and ataxia.

Now, his nonprofit organization, Ben's Friends, hosts message boards for more than 40 rare diseases. These boards get more than 200,000 views a month from all over the world. More than 70,000 people have joined one of these message boards.

Treating brains:Innovative stroke procedure restores Central Texas man's ability to see color

The need to connect

As Munoz was recovering from procedures for his AVM, he was reading "Tribes" by Seth Godin, about how the internet was building community. By then it was 2008, and he realized that while there were many support groups for people with cancer, there were not many for people with rare diseases such as an AVM.

"It's so hard for people with rare diseases to get together," Munoz said. In some diseases, you might be one of a handful of people in your area with the disease or you might even be the only one.

Once he started hearing from people through the message board he built about their AVMs, Munoz realized how lucky he was. He got to the emergency room quickly, and he was operated on within hours. He didn't have any lasting physical damage.

"The big impact is emotional," Munoz said.

Richard Danvers, who lives in England, found the AVM message board by web searching after he self-diagnosed in 2016 the pulsing that he could feel in his head. A doctor later confirmed his AVM. He is lucky because his has not yet ruptured.

He posted to the message board under his user name Dick D. that his first MRI was going to be that Monday. He needed help.

People responded. He remembers one who wrote: "Fear not, Dick D. You're going to be just fine."

Danvers said, "That's the kind of encouragement you need when the whole world has just changed ... all of the sudden, everything you took for granted is gone."

Danvers became a moderator and now works part-time for Ben's Friends. "Doing this kind of thing is very rewarding," he said. "Exactly the way I turned up and said, 'Oh my God,' everyone else turns up."

"As far as a rare condition is concerned ... there won't be enough people to rub together to create a support group in a drivable distance for each other," Danvers said. "We've got 8,000, 9,000 users of AVM Survivors. You can find someone who has gone through the same thing, but they might be in a completely different country."

The site is careful not to give medical advice, Danvers said. "Ninety-nine percent of this is just supporting people, being the person that listens. 'I was doing the exact thing as you five years ago.' It worries the pants off of you. The worrying about it is actually the worst part of it."

Hospice care:'Beautiful memories': Parents honor daughter's life by helping sick kids experience joy

Mike Angert of Arizona found his AVM in 2020 after he had a hemorrhagic stroke that was causing a severe headache he thought was being caused by a bad tooth infection. The initial emergency room he went to didn't know what to do with him because of the rarity of an AVM and sent him home, he said. He survived to the next morning and headed to another hospital, one that specialized in neurology.

A whole team of neurologists gathered to discuss his case and what to do. They injected glue into his brain to seal up the AVM and stop the bleeding.

While he was in the intensive care unit for six days, he learned about the AVM message board by web searching. Danvers was one of the first people who messaged him back.

"That's the most helpful place," he said. "There's nothing else online that is close to being this informative."

Angert wanted to know what his new normal would be like and when he would start feeling better. "You get to vent about your problems," he said.

Angert has some lasting numbness in his right leg and his right pinky finger. He has been to the emergency room multiple times since the brain bleed because he still has symptoms.

He still goes onto the board from time to time and reaches out to people when they have similar stories. Sometimes, though, the stories are worse than his and hard to take. "I really feel lucky to be me," he said.

Knowing stroke signs:AHORA: An Austinite's mission to create a Spanish memory aid for stroke detection

Ange Giannini from California had five blood clots in her brain in 2011 when doctors found the AVM in her brain. In her case, the AVM was actually causing the blood to flow backwards in her brain.

At times, the pain in her head felt like she was being electrocuted, she said. At times, she has lost the ability to verbally communicate. Some of the veins and arteries involved sealed themselves, but the ones that are still active are too close to areas of the brain that could cause paralysis if doctors went in. Instead, they continue to monitor her AVM.

The message board has been helpful, because, even though she always gets her medical notes, doctors sometimes don't know how to explain it well, she said. The board has helped with that.

"Even though I'm in a holding pattern, I continue to go to the site to share my experience and help other people," she said.

Other people just don't understand. "You look fine and people don't realize you are sick," she said. People will ask: "'Does your head still hurt?' Yes, it's always going to hurt."

"It's just been such a comfort," she said of the message board. "Your loved ones and friends can be supportive, but they just don't get it that you feel like you have a time bomb in your brain that you're walking around with. Only us on the board understand."

Stroke survival:Marine brings combat, stroke recovery lessons into role as Lakeway hospital chaplain

Funding the message boards

By 2010, Munoz began creating the nonprofit and building a board of directors for what would become Ben's Friends in 2012. It mainly started with people Munoz knew, who donated to support the upkeep of the message boards. Today, some of those donations come from the people who have benefited from being part of the message boards, though the boards are free to join.

Munoz also donates a portion of his ownership of the subscription clothing company, Nadine West, which he co-founded, to Ben's Friends, to create an endowment.

"The whole thing runs on the thinnest shoestring you can imagine," Danvers said.

Munoz said the budget for next year is $150,000, which includes a full-time executive director and some part-time staff, but mostly Ben's Friends and the message boards are run by volunteers.

Munoz wants Ben's Friends to grow, both in the number of rare disease message boards available, but also in resources.

The nonprofit is now working on providing a place to search for a curated list of clinical trials that can be better filtered based on the rare disease and the members in each group.

Ben's Friends is also working on outreach to different hospitals and foundations to spread the word about the support networks that it has created for rare diseases. The hospitals can work on the clinical side, the foundations can work on raising funds for research, and Ben's Friends can work on providing patients support.

"We're on our way," he said. "We've done the hard part, which is building the thing that could be launched. Now, we're spreading the word."

The AVM he was diagnosed with 16 years ago, "it changed my life," Munoz said. "I got a second chance. I want to make the most of it. That's what drives me."

This article originally appeared on Austin American-Statesman: Austin nonprofit builds community for people with rare diseases