When a patient goes to the ER, the last thing she wants to know is that her doctors have to Google her disease or ask her to explain the disease to them while she is feeling sick. But this is the unfortunate reality for Behçet’s patients, like Karen Gunter, who often know more about the disease than do their health care providers. Gunter, also medical liaison for the American Behçet’s Disease Association (ABDA), shares her concerns about the state of awareness of, and treatments for, this debilitating disease.
How did you learn you had Behçet’s disease?
In 2005, I wound up in the ICU with aseptic meningitis, which basically means I had inflammation in the brain. But they couldn’t find the cause. I was in and out of the hospital several times from 2005 to 2011. I was a manager of an outpatient dialysis unit in a hospital and didn’t have time to follow up on my health properly, which looking back could have led to an earlier diagnosis and treatment.
In 2011, I was back in the ICU, knocking on death’s door. After that, I wasn’t the same physically and cognitively, which finally made me realize that I needed to figure out what was wrong. Luckily for me, I found a doctor who knew it was Behçet’s disease right away because I provided him with a detailed history of symptoms that I experienced over the years. I didn’t believe him at first because I had never heard of the disease even though I had worked in the health care field for almost 20 years.
Have you found an effective Behçet’s treatment?
It’s frustrating. Behçet’s affects your daily living so badly you just want to find anything that works.
There’s really no particular medicine for Behçet’s disease. Doctors use medications off-label. When one doesn’t work, you try another.
It’s frustrating. Behçet’s affects your daily living so badly you just want to find anything that works. You know the medication is not for Behçet’s, but you’re still hoping it’ll work and are almost prepared to try anything. My doctor prescribed heavy doses of some drugs, but they didn’t work, caused allergic reactions or made me too ill to continue using them. They even put me on chemotherapy. For the seven months that I was on chemo, I was relatively stable and stayed out of the hospital, which was such a relief after being so sick for so long.
Seven months is a long time. How was the transition when you stopped?
It was bittersweet coming off chemotherapy. Even though I had begun losing some of my hair and experiencing side effects, I wanted to stay on chemotherapy because it helped me so much. Now I’m on another medication, which worked at first, but now I’m getting more frequent and severe flares. It’s back to the drawing board.
Since then you’ve accepted the volunteer position of the medical liaison on the ABDA executive board. In this role, have you found Behçet’s to be a particular financial burden on the health care system and on patients?
We’re going from one drug to another, seeing doctors left and right. So not having effective treatment options for Behçet’s disease is definitely driving up costs in health care. The lack of knowledge on how to exactly treat the disease is also increasing doctor visits, hospitalizations and testing. Unlike short-term illnesses, chronic diseases, especially ones that do not have true treatments, will crush health care financially.
When I go to the ER and tell them that I’m having a Behçet’s flare, they have to Google “Behçet’s.” That’s just the way it is right now.
For patients, in addition to facing high medical bills, many lose workdays due to the numerous appointments, hospitalizations, testing or flares that make it impossible for them to leave the house. Many patients find themselves losing jobs because of these absences, looking for less-demanding or lower-paying jobs because of their limitations or applying for disability. This affects not only the patient but also the patient’s family and environment. I cannot describe the incredible loss a patient feels throughout their journey with Behçet’s. They navigate through the stages of grief, not only from the illness itself but also from the physical, emotional and financial strains.
What has been one of the biggest challenges of Behçet’s?
In addition to the frustration of a lack of treatment options, many Behçet’s patients experience joint pain. Right now, the knuckles on my right hand and my right knee are swollen. I can’t tell you how painful that is. My doctors prescribed pain medication, but restrictions on access to narcotics have made those hard to get. Two weeks ago, I had a horrible flare and went to seven different pharmacies to fill my prescription. I was crying for the pharmacists to help. Behçet’s patients shouldn’t have to beg to get pain medicine.
Is awareness of Behçet’s increasing in the medical community?
Attending the International Conference on Behçet’s Disease in Paris last year, I was disappointed. While there was obvious enthusiasm, commitment and hard work being done, we’re not making the strides that we need to make. There’s not enough information out there yet, especially in the United States. We’re advocating in Washington for more research and trying to get more knowledge out there. But when I go to the ER and tell them that I’m having a Behçet’s flare, they have to Google “Behçet’s.” That’s just the way it is right now.
Are you hopeful that there will be more treatments for Behçet’s disease in the future?
People in the community are grateful that companies are taking the time to recognize Behçet’s and trying to do something. It’s the only way for us to move forward with this disabling disease.
As more physicians become knowledgeable and more people are diagnosed, the treatments will hopefully come. We all must unite as a community, as a family, and demand more ethical research for the treatment of Behçet’s disease.