Battling Behcet’s and Building a Community

Sarah experienced her first symptoms at age eight.

She suffered frequent and long migraines, despite being so young. Doctors were concerned she may have meningitis but never got to the bottom of her debilitating headaches. At age twelve, Sarah endured very bad acne, ulcers on mucus membranes, joint pain, and stomach issues.

Sarah and her oldest child

At 22, Sarah had her first child. She was suddenly plagued with even more symptoms. She got even more ulcers. One side of her face would sometimes go numb and she had persistent eye problems.

She had grown up only seeing a doctor when something was seriously and acutely wrong and the ulcers made her embarrassed to schedule an appointment. Her symptoms persisted but, at 25 she was caring for a young child, going to university, and, when her child was with his father, going out with friends.

She figured it made sense that it was all taking a toll on her body and that her lifestyle and responsibilities were the cause of her frequent fatigue.

She hit a turning point that year as her symptoms worsened even more. She, like a lot of people with undiagnosed Behcet’s disease was referred to an STD clinic because of the persistent ulcers but everything came back negative. Back pain, in tandem with the other symptoms, she saw her doctor ever more frequently. She had an x-rays and done bloods taken.

She was told she had degenerative spine disease and that her blood came back with markers for inflammation. She didn’t think anything of the abnormal blood results, figuring they were related to her back, until she was called back and referred to a rheumatologist. The rheumatologist performed a radioactive bone as well as other tests and she began seeing him every few months. He wasn’t sure what was wrong but thought, at first, that she may have lupus.

He discussed Sarah’s case with a fellow rheumatologist who told him confidently, “I know what she has. It’s Behcet’s!”

The other physician was from Cyprus, where the prevalence of Behcet’s disease is far higher than it is in the U.K. Many physicians in the U.K have not seen many, if any, cases of Behcet’s. Her background allowed him to identify it, without even seeing Sarah in person.

When it was hypothesized that she had lupus, Sarah had a fundamental understanding of what she may be up against. When she heard Behcet’s for the very first time, she thought it could be a death sentence.

She began treatment but responded poorly and began seeing a specialist who was a four hour drive away. She learned that stress can exacerbate Behcet’s symptoms and wondered if trauma during her childhood caused the disease to present itself so early. Most women present symptoms after the age of 30.

She also learned that she was not the only one unfamiliar with the disease; many general physicians were as well.

Sarah with her partner and her three youngest children

Sarah fell in love and went on to have three more children, including a set of twins. She found herself in a surprising, brief remission when pregnant with the twins, and then in a decline after her last child. Her doctor read up on Behcet’s for her, but still prescribed her a medication that wouldn’t be beneficial due to her condition. When she was able to see her specialist six months later, she was immediately taken off of it.

Sarah has spent far more time in bed then she would like. She is on treatment but still experiences residual issues from the side effects of treatments.

 

 

 

“It’s hard to be in bed for four years when you have lovely kiddies that need you and one who needs you even more due to autism.”-Sarah

 

Sarah struggles with mobility and cannot walk far. She often has to use mobility scooters around the supermarket or shops. She gets very stiff and experiences, what she refers to as the Behcet’s lead vest — crushing fatigue.

“My partner is my carer-he works part time. As a mum, to have a chronic illness is just devastating because you can’t do as much as you wish you could do for your children-or you can, and then do too much and have to recover from it. I’m lucky to have a very supportive partner and the kids are amazing. We do a lot of activities, as much as possible, but I have a lot of guilt.”-Sarah

Sarah

Originally, Sarah was not part of any Behcet’s Facebook group, but rather twin groups. She sought them out after feeling as though she was in a bad place, and found some “really lovely groups” within the Behcet’s community. These included Behcet’s disease/syndrome, Behcet’s disease and Behcet’s Disease Support The Blue Dragonflies.

Sarah eventually began a group of her own, or, as she says “I started the group, but it’s everyone’s group.” The group is called Behcet’s Warriors.

Sarah wants the group she started, Behcet’s Warriors, to be a welcoming place for individuals 18+ diagnosed with Behcet’s and their loved ones, but also for those who think they may have it but haven’t been officially diagnosed yet.

 

“The only rules are the Facebook community guidelines, so we don’t censor anyone. People can express their frustrations, talk about God, use profanities, whatever they want. I wanted it to be a place where people who are struggling or feeling sick, or in the hospital, could express themselves. We are all adults, and as such have to be responsible for what you share. People may challenge you, but you should also be prepared to be loved, helped, and supported.”-Sarah

Sarah admins her Facebook group with three others named Donna, Tracey, and Tessa. She describes them as “the best people ever”. The admins help to keep conversation flowing in the group. While it is still relatively small, they would love to have more people join. People are encouraged to share whatever they would like and are able to utilize video or live streaming as an option as vision problems often coincide with Behcet’s and typing can be difficult.

“I’ve made some amazing friends and there is a network of groups and we all try to support each other. We rally around people. You can feel so alone.”-Sarah

Sarah has since met only one other person in person who is also living with Behcet’s.  They connected through her online group and realized they lived close to one another. They have now been able to meet twice and have formed a friendship. The group has provided not only invaluable support, but also many lessons.

“I’ve learned so much about advocating for myself and fighting for the best course of action and treatment. I had been better advocating for others than myself. When you’re up against doctors who brush off your symptoms, or are puzzled because it’s rare, and they don’t want to run the tests you know they need to run, it can be so demoralizing. It can knock your self-esteem, and when that happens, you feel like your self-worth is on the floor. When we have low self-esteem we don’t fight for ourselves very well.”-Sarah

Sarah has started a charity in the UK, with the help of Tracey Moorely of Behcet’s Canada, that is patient focused to provide support and improve the lives of people living with Behcet’s.

“There is a charity that exists in the UK and we want to work with them, as well other charities, to help lives overall.  We want educate the health industry about how life is for people living with this disease and help people access what other people take for granted. It will be called the British Behcet’s Association.”-Sarah

“I really want to raise awareness of Behcet’s and create patient experts who talk to rheumatologists and general practitioners. It can be dangerous, even life threatening, when people don’t recognize the nuances of the disease. It can be very complex. Things are missed quite often and many are misdiagnosed with MS, lupus, Crohn’s, or even STDs. I want to help people sooner rather than later, in a big way. Relationships all too often fall apart under the strain of living with a condition like Behcet’s disease, and if we can help one person, their family and their romantic relationship it will be worth it.”-Sarah

 

For more information about British Behcet’s association please go to www.britishbehcetsassociation.com


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