At just nineteen, Beth often didn’t feel well and regularly had a sickly pallor. When she went to a doctor, the doctor dismissed her and told her she just needed to get more sleep. As she entered her twenties she continued to feel poorly. She felt as though she were on the verge of coming down with the flu constantly. She would get random fevers, headaches, and rashes. She went to see more doctors and was told she probably just had allergies.
In her thirties, Beth got married and had a baby. Her daughter was not even three months old when Beth took a turn for the worse. She had terrible joint pain, balance and vision issues. She also had fevers, and pain more severe than she had ever experienced.
The Diagnosis
For the next two years, Beth spent most of her time in bed, in between seeing doctor after doctor. She was told she must be depressed. She was told her issues were just related to being a new mom. She continued to fight for a diagnosis. Eventually, she was referred to a rheumatologist.
Beth listed her symptoms including weight loss, thinning hair, and increasing vision problems. The rheumatologist told her he wasn’t sure what was wrong, but agreed what she was going through wasn’t normal. Beth was then referred to an ophthalmologist.
He told her he was surprised she was referred to him, saying “It’s rare we find answers in somebody’s eyes.”
“He looked in my eyes, and the answer was there.”- Beth
The ophthalmologist saw uveitis –inflammation in the eye. Beth was referred to yet another doctor and finally heard, “I’ve seen this before.” She was diagnosed with Behcet’s disease.
Beth had done so much research on her own that she wasn’t totally surprised by her diagnosis. She more was relieved than anything else; everything she had been going through had finally been validated instead of dismissed.
Continuing Challenges
Despite having a diagnosis, life didn’t immediately improve for Beth. Her type of the condition is known as refractory. It’s difficult to control, as treatments tend to be effective only in the short term.
“The first five years of my daughter’s life things were really rough. We didn’t know what my future was going to hold.” -Beth
When her daughter was young, Beth imagines things must have been confusing for her. Beth wasn’t the soccer mom or the PTA mom; she was sick. She’s grateful that her daughter had additional role models in her life via teachers and good friends.
When Beth got remarried six years ago she found a new source of support. Her husband is there for her in sickness and in health and doesn’t treat her differently because of her condition.
An Advocacy Journey
Ever since Beth received her diagnosis, she knew she wanted to take an active role in advocacy someday, when her daughter was older and her health more stable. She thought, “I cannot let other people feel the way that I do or live the way that I do. When my daughter is older I’m going to do something”
One day, Beth was having a particularly rough time. Unable to sleep, she reached out to a woman, June Dunn, on Facebook who also had Behcet’s. June listened, chatted, and they truly connected. When Beth spoke of her desire to be involved in advocacy, the woman said, “Maybe this is the time, Beth.”
Beth thought about it. Her daughter had grown up. Her husband was by her side. She was familiar with the Behcet’s community online and saw the value in the all of the different groups. One of the misconceptions she noticed surrounding Behcet’s disease is that it impacts everyone in the same way. In reality, there are multiple types of the condition and it varies in severity. Beth had a vision for what she wanted to bring to the table.
She created a Facebook group with the goal of supporting others in a journey she related to. She knew people may not choose to join it, but wanted to share what she’d learned and to help others feel less alone. The group soon had 83 members, and now, years later, they have 4,500. June Dunn is the admin for the group.
“I know great care and poor care – I have been in the trenches. And I know what it’s like to rise back up. I could turn it into a situation where I could help others.”-Beth
Beth’s approach to advocacy is a collaborative one.
She recommends patients and their families check out the ABDA – American Behcet’s Association– which she feels does “excellent work in the community.”
She has also found an incredible resource and connection in the Vasculitis Foundation. The Vasculitis Foundation serves the entire vasculitis community and provides support for education, research, and healthcare providers.
“They[the Vasculitis Foundation] is an amazing organization. They are so supportive and they give their heart and soul. They have been a total catalyst for my journey. I am so honored to be connected to them.”-Beth
Beth recently won an award from the Vasculitis Foundation for her online advocacy and has been a speaker at their conference. It was there that she met others with Behcet’s for the first time. The rarity of the condition adds to the value of connections made over social media.
Beth is glad to have the opportunity to empower other patients, to let them know they are not alone, and to provide support. She wants everyone effected by Behcet’s to feel they can advocate for the best care at their doctor’s offices, their homes, and at their jobs.
“Empower yourself –read and research as much as you can and if you don’t feel that you’re getting adequate answers or what you need – go elsewhere don’t settle for inadequate care. If you feel something is wrong it is. Don’t discount who you are, what you know, and what you feel is wrong. You’re not crazy, you know your body.”-Beth
Beth hopes that awareness will continue to increase in the future and that “Behcet’s will become a household name one day.”
“We can only do so much, but there are other layers we can all bring together to make the community more whole it takes a village. I’m going to do as much as I can do, for anyone, with any disease. I hope to see easy access to quality care and to cures in my lifetime.”-Beth
