sunset over a lake

How I'm Using My Journey With Behcet's to Shine a Light on Rare Disease

135
135

My husband and I are urban explorers. We go into abandoned buildings – the saggy, unloved ones – and shine light in the dark corners. Our cameras find beauty and order in the chaos. We share the results with others.

It’s profoundly satisfying.

Now let’s make a few substitutions, so that “rare disease” is the focus of my efforts instead. Research and writing becomes that shining light, and a computer – not a camera – helps to create and distribute the final results. Welcome to my world: what I do with photography on weekends is a natural extension of my health-related calling over the last 20 years.

So what do I do? It’s a mixed bag. I’m a medical information “concierge” and advocate for people with a rare disease (I have Behcet’s disease) and for health care providers who have no time to research the unusual. I dig up the evidence-based materials and specialists that people need to move forward with treatment. I’m also a medical/health writer who can translate impossible medicalese into plain English. None of these jobs, though, are full-time. Instead, I make my living as a pharmaceutical case manager. I cram these other tasks into my “free time.”

I never expected to be an advocate for anyone. Becoming a medical information search specialist and a patient advocate was the direct result of being very sick, and being very sick wasn’t part of my life plan after college.

I was 23 when I started having health issues no one would want. But try explaining that to the doctors who thought I was looking for attention. In their eyes, I was too focused on my health. “Find something else to do with your time,” they said. I wondered what these doctors would say if they had to walk in my shoes for just one day. If they could walk at all.

What did I face? Uveitis. Oral ulcers. Genital sores. Skin lesions. Rashes. Pain.

I lined up specialists, but none of my specialists talked to each other. The U.S. healthcare system didn’t help: whenever I switched jobs and got new health insurance, I was forced to leave the few doctors who were trying to make a difference in my care. I had to start from scratch again and again as more symptoms kicked in.

Headaches. Superficial thrombophlebitis. Cataracts. Tachycardia. Vitreous hemorrhage. Peripheral neuropathy. Pain.

Add new health problems every few months. Rinse and repeat.

One PCP finally suggested Behcet’s disease as a diagnosis, but immediately dismissed it. “You’re white,” she said, “and you’re not from the Middle East. It’s too rare.” I’d researched online for years and already felt Behcet’s was the best option, but this diagnosis of last resort was always out of reach. I was continually shuttled into other categories that didn’t fit, but made the doctors feel more comfortable. They could send me for tests, believe they’d helped me and move on to other patients who had problems they could actually solve. I was an incredible time sink for people who had no time to waste.

After 17 years of frustration, I finally met with a worldwide uveitis specialist who was also an immunologist. I handed him my long list of symptoms. By then, I knew enough to keep my mouth shut and let him reach his own conclusions. Invariably, doctors never wanted to hear the name of the zebra bearing down on them.

“I know what’s wrong with you,” he said. “You have Behcet’s disease.”

The relief I felt was immediate and overwhelming – but at the same time, I was now the one who had no time to waste. How many other people were jumping over the same diagnostic and treatment hurdles I’d been facing for years? What could I do to help?

I joined the American Behcet’s Disease Association and started to put my writing and medical search skills to work. I’d always wanted to read about Behcet’s patients’ experiences, but a book like that didn’t exist. It was the start of my single-minded focus. I spent a year compiling and editing interviews I’d done with other BD patients. The interviews were eye-opening, especially when patients described interactions they’d had with physicians prior to diagnosis. For example:

“A doctor told me I was creating this illness because motherhood was not a challenging enough job.”

“One neurologist wouldn’t see me without my husband. Upon hearing [that I had just moved], he told me that my whole problem was relocation adjustment. Without examining me, he gave my husband literature on free-floating anxiety and told him this was the problem.”

I self-published the result of my efforts as the book “You Are Not Alone: 15 People with Behcet’s.” I was amazed by the response. These patients’ experiences touched a vital nerve in the Behcet’s community and opened a dialogue that was long overdue.

My first Behcet’s book was eventually followed by two more. The most recent – “Behcet’s Disease: MyModernHealth FAQs” – won a 2015 National Health Information Merit Award for Patient Education. I researched and wrote each of my evidence-based books carefully, with Behcet’s medical experts reviewing them prior to publication. While I wasn’t qualified to give medical advice to patients, I was still able to translate dense research studies into language everyone could understand.

Each positive email or social media post I received from patients, physicians and support groups gave purpose to my work. And now? Behcet’s is no longer the bane of my existence – it’s become a lifelong commitment to service.

I went back to school in my late 50s to earn a Patient Advocacy certificate from UCLA. My goal was – and still is – to help as many Behcet’s patients as possible. No one else should have to struggle for 17 years, as I did, without a diagnosis and proper treatment.

But here’s the good news: the tide is turning for patient engagement in rare diseases. The best health care providers are starting to listen to their patients, to accept personal experiences as learning tools. They’re realizing some patients have a depth of knowledge about their own disease that many physicians can only dream of. Some pharmaceutical companies are even reaching out to their patients for guidance.

Is there a way that you can shine a light on your own rare disease experiences? Maybe through writing? Social media? Photography? Public speaking? By helping with rare disease legislation?

Whatever you can do, now is the time. Make the most of it.

We want to hear your story. Become a Mighty contributor here.

135
135

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

Why Working Is a Big Deal for Someone With an Autoimmune Disease

301
301

I work today. An eight-hour shift. 4 p.m. – 12 a.m. Tonight will be my fourth shift in a row. Most people work a five-day week, so some might wonder why this fourth shift is such a big deal.

I, like many others, experience chronic pain, and on top of that I have an autoimmune disease called Behcet’s. I will also be having two disks in my back fused in the next few months as the result of a spinal cord injury I have been dealing with for four years now. So again, why is this fourth shift such a big deal?

I push myself every day. Like a lot of people out there struggling with their own illnesses, I push myself too much on a regular basis then run out of spoons and crash.

A lot of people who love me wonder why I do this to myself time and time again. Coming up with an answer to that isn’t easy or simple.

My life started to change when I was 30. I started to experience fatigue, pain and multiple random symptoms. Nothing added up. At this point I was sometimes working 12-hour days. I was always on the go and attributed my symptoms to working too much and not getting enough rest. I’ve always been a hard worker. I’m a personal support worker. The days are long and challenging. I would be the first to stay late if the next shift was working short and the first to accept call-ins if someone was sick.

By the time I was 32 I was really struggling. I suffered an injury to my back/neck at work. I spent months doing rehabilitation but eventually had to quit my job because after that injury I just couldn’t keep up. The things I used to be able to accomplish in a day became less and less. At this time I didn’t understand the difference between being tired and fatigued. And I began to experience depression, because accepting you can’t do what you used to be able to do is hard.

Now I’m 36. Over the last four years I’ve taken almost two years of sick leave. I’ve had to quit another amazing job that I loved. I survived a military move (my husband is in the military) and got settled in a new city. I got a job (not working as a personal support worker) I thought would be less demanding and hard.

What I’ve learned is that just being able to work is hard!

The struggles of dealing with chronic pain and an autoimmune disease that attacks at random is a reality I have to deal with every day.

I work because there are parts of me that don’t want to admit I can’t work. I’ve given up so much over the years. I fight to hold onto everything, even when it hurts.

So this fourth shift is a big deal because I’m exhausted. I’m actually beyond exhausted.

But I’m going to go to work tonight and put a smile on my face. I’m going to make sure all the residents get what they need, I’m going to get all my work done and I’ll look forward to my bed at the end of the night.

Tomorrow, when I’m hurting, I’m going to look back and be proud. I can’t always handle four shifts in a row. Some days I barely make it through two or even one. And I don’t know if or when I won’t be able to work that fourth shift again.

This week, despite the pain, was a good week. Not because I didn’t struggle, but because I accomplished something that for others may be easy but for me is very hard. I worked.

Now I won’t get into the fact that I have a pile of dirty dishes in my sink, dirty floors that haven’t been washed in weeks and mountains of laundry to do. I’m still waiting for my magic cleaning fairy to come. And even admitting my house is dirty is a feat in itself. Those who know me know I hate having a dirty house. But I’ve met some amazing people this past year who have taught me – if nothing else – that I have to prioritize where I spend my spoons. And unfortunately that means the dishes and floors will stay dirty for today.

Be proud of the things you accomplish in a day. Not everyone is going to understand the struggles. Not everyone is going to be able to see how much energy it takes some days just to get dressed. I’m writing this on my couch, in my pajamas.

I write this to give hope. To give strength to others who struggle like I struggle. You’re not alone. Today is day four for me. For that I am proud.

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.

301
301
TOPICS
JOIN THE CONVERSATION

What a Child Wishes for When They Have a Sick Parent

1k
1k

When I was a little girl, I looked up at the sky every night to search for the brightest star. When I found it, I closed my eyes tight and made the same wish in my head, “Find a cure for my mom.”

I vividly remember repeating it as fast as I could when there was a shooting star, as I believed they had more power in granting wishes.

I never wished for a Barbie doll, a pet or a trip to Disneyland. I just wanted Behcet’s Disease to leave my mom’s body and our family.

This rare, incurable, autoimmune illness had incredible power over us, and I wanted to destroy it with my wishful thinking.

As you can guess, it never came true.

However, other unexpected wishes did.

Resiliency, Empathy and Hope.

These aren’t your typical wishes, but they serve a purpose in my life. They guided me through my childhood into adulthood, viewing things with a different perspective.

I remember how angry I would get when I heard peers making fun of someone due to their appearance or struggle with a task. I could feel the pain from the insults, and I would speak up. They needed to be aware of an invisible disease.

I wanted people to feel included and accepted as they are.

Often times, I played a care-taking role, retrieving ice packs, medication and a thermometer for my mom. The flare-ups were harsh and restricted her to a dark bedroom while waiting in agony for the pain to diminish.

Those were the nights I searched for a shooting star.

I became comfortable in a hospital setting, and I loved to rummage through storage cabinets and take whatever I was allowed to — ID bracelets, basins, gauze, tape and of course a gown. I would bring it home and play doctor, foreshadowing my career.

These unexpected wishes have fueled my passion in working with others. I understand how an illness impacts the whole family, as it’s never an individualized disease. I know there can be setbacks with an additional diagnosis, complications and waiting for an FDA-approved treatment. I know people living with chronic illness don’t want to have a pity party; they just want to live a normal life, even though their normal is a bit different. I have a genuine admiration for my mom and others who face life’s challenges and still find the courage to push forward.

To any person who’s parent is sick, remember that you aren’t alone, and it’s OK to share your feelings, even if you think they may upset your parent. Ask questions, talk openly to your family and remember you did not cause their illness. Together you will get through this.

I’m now 35 and still making wishes.

shani

This post originally appeared on child life mommy.

1k
1k
JOIN THE CONVERSATION

Watch This 8-Year-Old Boy With Cerebral Palsy Have an Epic Finish Line Moment

7k
7k

As 8-year-old neared the end of the race, he heard the raucous cheers from the crowd of supporters surrounding him. Then, just yards from the finish line, he pushed his walking frame away and, despite falling and having to get back up again, finished the race unaided.

Bailey, who has cerebral palsy, completed the Castle Howard Triathlon in North Yorkshire, England, on July 26, The Yorkshire Post reported. The event included a 100-meter lake swim, 4,000-meter bike ride and 1,300-meter run — no easy feat for any child.

Bailey has always been very determined. If he wants to do something he will find a way to do it, even if it is not the conventional way,” Bailey’s mother, Julie, told The Yorkshire Post. “We have always tried to make sure that if there is something he wants to do, there is no such word as ‘can’t.’”

Although Bailey was the last one to finish the race, hundreds of fans and spectators waited around to cheer him on towards the finish line. His family was deeply touched by the support of everyone in attendance.

Watch Bailey finish the race in the video below:

 

7k
7k
TOPICS
Video,
JOIN THE CONVERSATION

How My Disability Taught Me to Embrace My Own Uniqueness

9
9

Growing up with cerebral palsy in an environment where there was no one to really identify with made it difficult to establish my own normality. So I grew up spending most of my time trying to be the normal I saw around me and fit in. This was fairly ironic seeing as how I’m anything but normal by nature!

I learned it was important to be more like others and less like me if I were to fit in. And yet no matter how hard I tried to fit in, there were always skeptics. From a small child wanting to wear roller skates to my decision to become a teacher, I have always been met with skepticism, which means I have spent a large amount of my time proving people wrong. If the skepticism was meant to deter me, it had the opposite effect entirely. Instead, it fueled my determination to succeed, if only to prove the impossible possible. Each obstacle enhanced my belief in myself and strengthened my spirituality.

I succeeded. I became a teacher, got married and had children.

However, sometimes when you think you’ve figured everything out and appear to have a handle on the situation, life throws you a curve ball. In my case, it was a stroke. After the stroke, the full extent of my disability came to the fore. Whereas before I had a slight limp and my hand was only mildly affected, I lost function in both. I also lost my ability to speak clearly and concisely.

What did I do? I did what I do best. I adapted. Those around me continued to struggle to come to terms with the situation. As far back as I can remember, it was instilled in me that I would one day have to provide for myself. The option of it being someone else’s job to look after me has always been very far removed from my reality and was never an option.

But now I choose to accept the circumstances as they are rather than dwell on what I was capable of before. I am indebted to my children who, from the onset, accepted who I was and, in turn, allowed me to do the same. The stroke has allowed me to embrace my new uniqueness. Instead of feeling ashamed of what has made me different to everyone else, I have learned to take pride in my individuality. I would never have done this in the past.

I have never lost my passion for teaching or discovering my sense of self. I now know who I am and I’m more at ease with myself. My goal of passing on knowledge and broadening horizons has always been the same, but I have had to adapt my thinking and learn to let go of the conventional and listen more to that little voice inside my head that says don’t give up when everything else around me has.

I still feel like I have something to give, and while my body may have given up, my belief that my voice can still be heard is something I hold on to. I use it to motivate myself, especially on days when I think, “What’s the point?” I like to think that this unexpected detour in my road hasn’t been in vain. I hold on to the hope that maybe in my own small way I can contribute and make a difference. Attitude is everything!

I would like to teach my children that whatever challenges they face, it’s up to them to decide how to confront those challenges, learn from them and find something positive to take from them.

I don’t believe my story is different from many others. The difference may only be that I have chosen to share mine with you. It only takes one individual to stand up, be counted and make a difference. This is what truly motivates me.

Perhaps if we all made a positive difference in our own unique way, we would feel more connected to each other and less afraid to be imperfect.

Lesley Potgieter the mighty.1-001

A version of this post originally appeared on WonderBaby.org.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

9
9
JOIN THE CONVERSATION

This 25-Year-Old With Down Syndrome Just Published His First Book

26
26

Marcus Sikora has a flare for the creative.

The 25-year-old from Omaha, Nebraska, has acted in school productions and wrote and produced a one-act stage performance in cooperation with a local high school.

Sikora also has Down syndrome, but that hasn’t stopped him from achieving something that would be impressive for any 25-year-old. As of June 2015, he can add “published author” to his list of accomplishments.

author sitting in library

Sikora’s first book, “Black Day: The Monster Rock Band,” is an illustrated 40-page children’s book. It tells the story of Brad, a paperboy who dreams of becoming a rock star. When Brad discovers the band “Black Day” — comprised entirely of monsters — rehearsing in an old garage, he approaches them and asks if he can become their new bass player. The monsters’ response is swift: “No humans!” So Brad sets out to change their minds. However, he realizes the “Black Day” bandmates have much bigger concerns on their minds.

Black Day: The Monster Rock Band book cover

“[Marcus] is an incredible storyteller with an imagination to be envied,” his mom Mardra Sikora told The Mighty in an email. She and her son worked on “Black Day” together with Marcus Sikora dictating the story as his mom transcribed it.

“Sometimes I’d ask ‘What’s next?’ or ‘Why?’ and Marcus would answer, ‘Stuck,'” Mardra Sikora told The Mighty. “‘All right,’ I’d say, ‘We’ll come back to that.’ Then the next week, we’d pick it up again.”

Author and children asking for autographs

An animated short version of the book, which Marcus Sikora wrote, directed and voices for one of the characters, will be released on DVD around October 1 (trailer below). A “Black Day” music video is also in the works. In the meantime, Sikora is already contemplating the book’s sequel.

Watch the trailer for the animated short and take a look at some of the book’s illustrations below.

Black Day comic

Black Day comic

“Black Day: The Monster Rock Band” is available for purchase here, through Amazon or through Mardra Sikora’s website. You can also keep up with Marcus and Mardra Sikora via Facebook and Twitter.

All photos courtesy of Mardra Sikora.

26
26
TOPICS
,
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.