Rare Disease Day

We spoke with Kaitlin A. Kerr, former oncology nurse, current actress, model, and writer about her experience coping with a rare disease. Kaitlin has Ehlers Danlos Syndrome. According to the National Organization for Rare Disorders, Ehlers Danlos Syndromes (EDS) are “a group of related disorders caused by different genetic defects in collagen.” Through the trials and tribulations that this diagnosis has brought Kaitlin, she learned how to maintain positivity and grace in the face of adversity while also being true to her most authentic and “less instagrammable” self. She now is focusing on the happiness in each moment of life, creating art she is passionate about, and maintaining relationships with friends. Read below to find out more about Kaitlin and how she copes with EDS while still leading a fulfilling and passionate life.

(Kaitlin A. Kerr, RN interviewed by Valeda’s Marisa Postava, PharmD)

1) When were you diagnosed, and what was it like to have a name for your condition?

“It’s so interesting, even being a nurse a decade before my diagnosis I had only heard of EDS in passing and they only talked about the vascular type which typically is associated with a shorter lifespan and greater, more life-threatening risks. Having a name for something that contributes to most of my medical conditions allowed me to figure out what I am at an increased risk for and how to tell my medical team what to watch out for when treating me. I’ve had health issues since birth and when you pair it with hypermobile symptoms, it should have been obvious but there was not as much awareness about hypermobile EDS at that time.

I was diagnosed in early 2017 after severe pain had kept me from working [as a nurse]. I had to wait a year for genetic testing to confirm the diagnosis because they have to rule out other forms of EDS before they give you a hypermobility diagnosis. This involves a combination of testing and looking into your entire medical history. On my end, I had to figure out how a diagnosis would help me or not help me in certain situations. I had to learn what parts of the diagnosis were useful for me and what lifestyle adjustments I needed. Now I’m able to tailor my therapies to my specific health needs, as well as know what to warn providers about. For example, if I have to be intubated for a procedure, I tell an anesthesiologist that my jaw can dislocate.

There is really no specialist for EDS so I see a lot of doctors for the different body systems my condition affects. I feel like I’m educating my providers a lot of the time, so it is important that I have a provider that can learn from my experiences with EDS and listen.”

2) How did your diagnosis change your daily life?

“My daily life has changed but that occurred even before my diagnosis in 2017. In 2016 I went to Peru, got a bad parasite infection, and was put on Cipro when I returned. Fluoroquinolones carry a low risk of tendon rupture. This risk is higher in people with connective tissue disorders, but at that time, I had no idea that I had EDS. I was on the medication for two weeks, and while on it, I tore my labrum and biceps tendon just by doing activities of daily living. My symptoms all got worse at the same time after that, which I’ve heard is common. For many patients, an infection or illness can trigger EDS to get worse enough to be noticeable and noticeably affect functioning. I had pain, neuropathy, mast cell activation syndrome (MCAS), autonomic dysfunction, and autoimmune diseases that all got worse in the year following the tendon tears.

Like I mentioned, I did have issues for most of my life, just not bad enough to significantly impact my life until that point. At birth, I had hip dysplasia and a fractured femur despite being delivered by C-section. I grew up with scoliosis and dental issues; fine motor skills were hard to master, and I was slower to master them than my peers. I had chronic pain in my neck from the time I was 13 and they couldn’t figure out why. I learned to live with it and find work-arounds. I was able to finish school and get an English degree as well as a master’s in nursing. But after my experience with the tendon rupture and subsequent severe pain led to a situation in which, all at once, my symptoms became less manageable.

If you don’t live with me and only see me on the internet, it looks like I lead a normal life, but that is far from the case. For example, right now I am laying in bed over tennis balls and ice packs to help with pain. Right now, I work remotely, part-time, not even in my field and sometimes even for a 3-hour shift, at my best. I often have to rearrange my schedule. If I do a modeling shoot, I have to take the next 3 days to lay in bed. I’m on about 30 medications, 20 of which are prescriptions and they have a high out of pocket cost with insurance. I can do some activities, but I can’t cook because of the physical requirements. I pick one cleaning task per day to minimize any pain I could experience. Something like laundry, my partner does because I can’t go up and down stairs with a load and I cannot lift over 10 lbs. I cannot drive more than 20 mins independently. If it is a long drive, someone else drives and I lay in the back seat otherwise I’d have a lot of pain. It can be hard to show this even if I’m very transparent. I can’t accurately show my friends what my life is like at times because sometimes I’m in so much pain that it is not something I am able to do in the moment.

Humor is my coping mechanism, but I still try to show the less ‘instagrammable’ parts of my life. For every 1 date-night, poetry publication, or modeling photo I post, there can be 9 days where I am unable to do anything. The absence of that something is what is hard to show others. I am not looking for pity when I post about something less glamorous, like how I cope with pain. At the end of the day, my life goal has now become all about happiness in every moment, art, and maintaining the connections I have with my friends.”

3) How did you go about getting your medications covered?

“Initially, it was a 2.5-year process to get Medicaid and Social Security Disability (SSDI) coverage. I got coverage in 2016 and I thought it would be great, but I was still spending $1,000 out of pocket on medications per month, not to mention additional medical costs. These were costs that were draining my retirement accounts. I later applied for MAWD (Medical Assistance for Workers with Disabilities) but the process was very difficult and many people, even those working for Social Security, are unfamiliar with it. It took about 6 months to get that approved. I continue to receive assistance from the Pennsylvania Health Law Project as I apply for assistance programs that help me afford medications and maintain a quality of life. Currently they are assisting me in justifying to Social Security that I qualify for “Extra Help” (or LIS/low-income subsidy) that assists with high medication costs. I qualify for this program because I have Medicare and Medicaid, but many government employees do not know this, and even though the policies of the CMS and SSA allow my qualification, the system has barriers, even to programs patients should have automatically.

There have even been a couple of medications I have had to stop taking due to lack of coverage and cots. Cimizia had helped me a lot in the past for my autoimmune diseases, but when I switched insurance over the summer, it was no longer covered. They tried Humira, but then I found I have antibodies to it, so it doesn’t work for me. And sulfasalazine led to constant UTIs for me. I’m in the process of appealing again to get Cimzia covered on my dual plan. I learned that Medicare doesn’t cover certain things like vitamins or birth control. Providers have recommended medications to me in the past that I couldn’t take due to lack of coverage and I have to explain to them it’s not that I’m non-compliant, I just can’t afford the medication.

As time has gone on, manufacturers have started excluding those with Medicare/Medicaid coverage from their patient assistance programs. These used to really help people like me. Disabled Medicare beneficiaries are a vulnerable patient population and have high medication costs even with coverage. I think that lawmakers need to focus on things like prescription drug costs, because this is a significant challenge that I have been facing and others face as well.”

4) How can providers help to empower you, the patient?

“Providers who are willing to learn about a disease are great! I am so open and trusting of doctors who can admit they may not know about something but want to learn about it. It’s important that providers listen to me and don’t assume that I am faking. I read somewhere that “it is hard work being a credible patient.” I may not look disabled, but it is important for providers to not assume how I feel just based on how put-together I may look that day. When I was a nurse, I’ll admit that I may have done this to others, but you need to check your assumptions about how a patient may express extreme pain. My go-to coping mechanism is usually to be jovial and joke, but for a doctor to assume that because I am doing this, I don’t have extreme pain is something they need to question. It is best when a provider can come up with a game plan with patients and help them look for programs based on their needs.

Being sick is a lot of work! I make multiple phone calls to doctors and insurances daily and their ability or willingness to take some of it off my shoulders is so valuable. Even expressing interest or care can help so much. I accept my condition has progressed to a certain point, but I can also want a better quality of life. The goal of “curing” me isn’t attainable, but a better quality of life is with the right tool and access. Any healthcare worker who is willing to help research options in costs, therapies, and modifications for everyday life is so helpful.”

5) How do you empower others with disabilities?

“I love just being able to have an open door for people. If I can help someone with recommendations or tell someone they are not alone, I can make meaningful connections with others in my situation. Being open to me is about acceptance and creating a new life for yourself, even if it won’t look the same as it did before. It took me a long time to be able to reassure myself and others that acceptance of your limitations is not the same as not advocating for yourself and proper treatment. Both things are extremely important. All of these have been very helpful in forming a community.

I’ve met other disabled models and we can express a common experience and community through our art. It’s also nice to know that they may also need some recuperation time after a shoot and it’s something we can bond over. In modeling, my body is my choice and I can make art with the same disabled body and it’s a very empowering thing to do. In my poetry, I have been able to connect with other disabled poets. My writing, even if unintentionally, is informed by my experiences with disability and pain. Connecting with others on a basic level through writing, sometimes leads others to ask questions about my work and they may ask what it is like living with chronic pain or being denied certain civil rights as a disabled person. I also run a theatre company with my partner, and since COVID we have been talking about how to make the company and productions more accessible to disabled artists and patrons. In addition, we have talked about how we can support marginalized people through who we involve in a production and what we decide to direct. Getting back into acting was so helpful because I could be creative and collaborate in a different world with others and it helps distract me from pain. Sometimes I even memorize a monologue just to keep me distracted! This outside the box thinking with Zoom theatre has also been a great way to include more disabled artists and empower them through storytelling. It is just one way to make art more accessible to those who are disabled.”

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About Valeda Rx

Valeda Rx is an independent national specialty pharmacy, servicing all 50 US States and the District of Colombia. We are focused on improving the care for patients living with complex and chronic conditions such as Hepatitis C, HIV, Multiple Sclerosis, Rheumatoid Arthritis, Psoriasis, Crohn’s, Oncology Diseases and more. Our Care Team puts patients’ needs first, treating each as though they were part of our own family.

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