Hypokalemic Periodic Paralysis

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Hypokalemic Periodic Paralysis
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    How Medical Gaslighting Harms Women With Periodic Paralysis

    The scowl on Ms. Booth’s face signaled she was in a bad mood. Oblivious, the rowdy backbenchers in homeroom carried on. Ms. Booth began roll call. Meanwhile, the buzzing inside my head steadily grew until my skull filled with TV static. I had barely slept the night before, working on a paper due that day. I sipped coffee from my thermos to wake myself up, thinking about how I had to stop pulling all-nighters. At 16, no one listens to good advice, even their own. “Nafisa?” called Ms. Booth. “Here,” I attempted to reply, but nothing came out. My tongue lay heavy like a slug in my mouth, unmoving. “Nafisa, I’m talking to you,” she said sternly. I tried to raise my hand to my mouth, but it wouldn’t cooperate either. This is when I realized that both my arms had stopped working. They lay on the table in front of me like bags of wet sand. My legs became pillars attached firmly to the linoleum floor. My whole body was paralyzed. I would scream if I could. It is a year of a hundred needles drawing blood from my veins, leaving nasty bruises, and being inside large buzzing machines before a kindly neurologist confirms the diagnosis: hypokalemic periodic paralysis, a rare ion channelopathy characterized by muscle weakness or paralysis when there is a fall in blood potassium levels. At sixteen, I had yet to understand the concept of medical gaslighting, but I was not unfamiliar with it. In fact, the year of searching for answers for what was happening with my body was frequently responded to by doctors with incredulous looks, asserting I was searching for attention, and questions about my history of mental illness. One doctor asked me to step out of his office while he directed my mother to search my room for drugs. It hasn’t gotten easier, even with a clinical diagnosis. I have yet to receive a local prescription in New York, where I’ve lived for the past six years, for the medication necessary for my survival. American doctors have difficulty believing a diagnosis, no matter how accurate, from a third-world country. I go back home to Bangladesh and return with my luggage filled to the brim with boxes of medication, smuggling it past airport security. In late October, I attended a telehealth appointment with a new neurologist, a specialist in neuromuscular conditions. “Strange, I’ve never met a woman with periodic paralysis. All my patients are men,” said Dr. Khasani, flipping through my medical history. This came as a shock. Since the age of 16, I have been part of the online Periodic Paralysis Network (PPN) Support Group on Facebook. When medical professionals were unable to explain to me the implications of living the rest of my life with this chronic condition, it was this group where I found meaningful support, invaluable medical information, and tips on how to advocate for myself. The group today has almost 1,100 members, and 9 out of 10 of these members are women. A day after Thanksgiving, I scheduled a Zoom call with Dodie, another member of the group. Dodie is currently living alone in Laguna Vista, Texas — “the warmer weather helps,” she says — but spent most of her life in small towns around Omaha. She smiles as she tells me she is a mother of six and a grandmother to eight. But the pandemic meant she hadn’t seen her kids and grandkids in nearly nine months. Dodie, at age 64, was finally diagnosed with Anderson-Tawil syndrome (ATS), a rare form of periodic paralysis, in April 2020. She explained,, “My symptoms began when I was 6 years old, with rheumatic fever, which I found out later that those with ATS often have rheumatic heart disease. I would get weak a lot. I was always trying to push myself so people didn’t think I was a hypochondriac.” “When I was in upper grade school, the PE coach was looking for someone to represent us in track and I was the fastest runner. But after one sprint, I just couldn’t run anymore,” said Dodie. I nodded, extremely familiar with the exercise intolerance that came with periodic paralysis. “I was a teenager babysitting for my aunt the first time I tried alcohol. She had some vodka in her fridge and I wanted to find out what all the fuss was about. I had just a tiny bit, and soon my arms and legs were paralyzed. I kept that to myself for a long time.” This too I recognized. Alcohol is another common trigger for those with periodic paralysis. “But it wasn’t until I was 29,” continued Dodie, “that I had my first full-blown, full-body episode. I remember being in the ambulance and hearing the EMTs saying I was unresponsive. I could hear everything they were saying and I just remember thinking ‘Oh God, just don’t stick me in the ground!’” “My husband and children never believed me,” said Dodie. I could see her eyes fill with tears on my laptop screen. Dodie and her husband ended up divorcing because of her health issues. “It was only after the divorce that I found out that he had been telling people for years that it was all mental. My eldest son, who has always been supportive, finally said to me a few years ago, ‘Mom, I never believed you were sick.’” Dodie had periodic paralysis for nearly six decades before she received her diagnosis, only seven months prior to this conversation. I asked her about it. “I was in a group for people with hemiplegic migraines and someone mentioned periodic paralysis. I found the PPN two years ago in 2018 and I was sure within a few months that this is what I had. Wish I had a dollar for every time I was told it was conversion disorder. The group gave me the validation of being treated like someone with an actual illness.” She paused here. “If I could have been diagnosed in my 20s, I could have had my life with the man I loved. My children would have believed me. I wish I hadn’t had to wait ’till I was 64.” “In this group, we’ve all had experiences with medical gaslighting,” said Sarah, also a member of the support group. Sarah is in her 40s. She was born and raised in San Diego. Sarah began experiencing mental health symptoms like psychosis when she was 23. By the time she was in her 30s, she had had 37 different psychiatric drug combinations prescribed to her. Finally, she was asked to do electroconvulsive therapy (ECT). “I lost 36 years of my memories. I forgot how to read, write, do double-digit math.” The repeated exposure to electroshock had also messed up her ion channels, resulting in an extremely rare case of acquired channelopathy and periodic paralysis. “I was having complete flaccid paralysis. I would have episodes of painful, painful dystonia and then that would go away. It became a puzzle and doctors were telling me I was looking for attention. I searched on google — something like ‘periods of paralysis’ — and found that it was a real illness. It is such a relief to me to find a group of people with the same symptoms as me.” Before the interview, Sarah had mentioned that she was in the process of finally getting a clinical diagnosis. “There was a thread on the group talking about the difficulty of getting a diagnosis, gaslighting, the lack of compassion, the lack of curiosity in healthcare. Someone said, ‘Well, if I were you, I’d go to Advent Health in Florida to Dr. Jerath. She won’t say you’re not experiencing these symptoms and she’s studied neuromuscular conditions extensively.’ I’d been trying to find answers for a decade. I finally found them with Dr. Jerath and I would’ve never found her if it wasn’t for the group.” “They’ve found me a case manager who’s coordinating my care in San Diego. They got my physical therapist, occupational therapist, GP, and visual rehab therapist on the same call to discuss the best course of care. For the first time, they didn’t look at me through the lens of a psych patient. I couldn’t stop crying.” It finally began to click. There is a dirty little secret in healthcare: female patients are continuously gaslighted about their physical and mental health. A study found in American Emergency Medicine found that women who went to the ER with severe stomach pain had to wait almost 33% longer to receive treatment than men with the same condition, and this is just the tip of the iceberg of healthcare’s gender bias issue. Sarah and Dodie are both white, college-educated women. What happens to brown women? To Black women in America when the origins of American gynecology are intimately linked to the brutal experiments enacted upon the bodies of enslaved women? What happens to folks who exist outside the gender binary? What happens to queer people when medical negligence on a national level, during the AIDS epidemic that killed our elders, is still fresh on our minds? The reason women flocked to our online support group despite the lower prevalence of periodic paralysis in females is the lack of support and treatment we receive from the healthcare system. What could we do but build our own networks of support, be our own advocates?

    Community Voices
    LMPF
    Community Voices
    LMPF
    Jessica Acton

    Advice for Living With Hypokalemic Periodic Paralysis as a Teenager

    Jessica. I have always heard your teenage years are the hardest. If I had only known how horrific they would soon become, I would have enjoyed the little moments we all take for granted just a little more. Like the family gatherings, favorite movies, or just times I could run, jump and play like a normal child. With any disease, the shock after diagnosis can be mind boggling. When it’s a rare disease people have never heard of, it can be difficult to explain and others often accuse you of exaggeration. There is no need for exaggerating; the symptoms of my disease are horrific enough as it is. My rare disease affects less than 3,000 people in the U.S. It abruptly occurs before age 15 and I was right on schedule! Before I had a referral to a specialist, there were many trips to the ER with no answers, test after test, a misdiagnosis and ending up in critical condition. After my first diagnosis by a local doctor, and then an endocrinologist, Nationwide Children’s Hospital in Columbus Ohio gave me my third and fourth diagnoses. It was official — I had a definite, unmistakable diagnosis, a rare neuromuscular disease called hypokalemic periodic paralysis. One person in every 100,000 people will have my disease. People often make the comment that “I look fine, so I must not be sick.” I guess my only question is, “What does sick really look like?” My condition is caused by a defect in the CNA4A gene. It is congenital, which means it is present from birth. I have regular bouts of tachycardia when my potassium drops, with my heart rate nearing or over 200 beats per minute. My legs will shake from weakness too. My potassium has been as low as 2.1 during an attack and it causes nausea and vomiting. I have been placed in critical care while in the hospital to get my attack under control. The ability to use my muscles becomes hindered during and after an attack. No amount of rest seems to cure the weakness this disease leaves behind. Heart arrhythmia is possible from the loss of potassium, as well as the need for intubation should the diaphragm become paralyzed during an attack. Any muscle in my body can become paralyzed due to the lack of potassium in the blood. These attacks come out of nowhere with usually no warning and the symptoms linger like a black shadow in my everyday life, waiting to make its attack on my body once again. It is possible to wake up in the morning completely unable to move or even open your eyes, but you can hear everything around you. You’re essentially trapped. Although not much can be done to prevent further attacks, including taking potassium supplements daily (but I still take them) and there is no cure for my disease at this time, it’s nice to have a diagnosis. It’s helpful to have a plan and know that I will not travel this road alone. Karate is a constant in my life — a therapy not only for my aching, weak muscles, but also my mind. Even when I can’t do what I once could, or train as hard as I should be, I turn to it to lead me through the darkness. It’s the one thing I could not give up. Recently I woke up unable to move my arm and I’ve days when I could no longer wiggle my toes. My right side is becoming weaker and slower and my right arm shakes when I try and use it. You see, the more times you have an attack, the muscles can be left with eventual permanent, irreversible weakness. My legs swell and I’m completely and totally exhausted. I have had to limit my activity and learn to pace myself. I am still attending school and plan to keep going and trying to be as normal as I can until I can no longer tolerate it. This isn’t how I imagined my first days or months of being 15 years old. I have hope for a bright future and I wear my disease proudly! My parents and sisters have been my biggest supporters. I have a great group of friends and classmates who understand and are right there with me as my family and I travel this road I call “Jessi’s Journey.” To other teens like me struggling with a rare disease diagnosis, here’s my advice: 1) Please, never hide who you are. Always embrace and be proud you’re different, because that’s what makes you special. Never be afraid to reach out to other people about your disease because someone in the world knows just what you’re going through and strength is found in numbers. Alone we are rare, but together we are strong. 2) Use social media. It is a great tool to use to meet others with your disease. No one will understand what you’re going through better than someone going through the same thing. These “angels in disguise” can become your biggest supporters and hopefully lifelong friends. Life continues after your diagnosis. You will have good days and bad days and sometimes you will struggle, but never forget how rare you are. And most importantly, love yourself. 3) Record even the slightest changes in your health. This includes any new symptoms you encounter. It will make it easier to find a pattern which could lead to a better treatment plan. This isn’t the end of the world, it’s a bump in the road. Having a record of every “pothole” will shorten your road to recovery. 4) Acceptance will come. Even if it doesn’t seem like it, it will come. Just because you are sick doesn’t mean you can’t try to make the best of it. Once you have accepted your diagnosis, you can start to build your life around it and pace yourself. Sometimes the slightest adjustment to your diet or everyday living routine can lead to another symptom-free day. 5) Most importantly educate yourself and others. This includes your friends, your family, teachers and medical staff. It’s important for everyone close to you to be aware of your disease in case of emergencies. Raising awareness can impact others like you as well. 6) You are your best advocate. If you’re not happy with your treatment plan, your doctor, or you feel like no one is listening to you, you have to advocate for yourself. Ask questions, get another opinion or schedule an appointment with a new specialist. Fight for the life you have been given and most of all, never give up hope. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.