Living with Hypokalemic Periodic Paralysis at 25

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For 25-year-old Tori, maintaining positivity is the key to handling her complicated health issues. Most people her age don’t have to go to the hospital over and over and over again — but for Tori, that’s normal life. I wanted to speak with her to get a sense of how she’s doing both physically and mentally. I was filled with hope after our conversation. Her optimism is contagious!

Tori, who lives in Atlanta, has been diagnosed with Hypokalemic Periodic Paralysis and Myotonia Congenita. Periodic Paralysis causes her to have low potassium in her blood, leading to episodes of full paralysis, extreme vomiting, trouble concentrating, hot and cold flashes, and other painful symptoms. Myotonia Congenita causes her to have muscle spasms that look similar to seizures. However, most of her symptoms come from Periodic Paralysis.

Four years ago, Tori was clinically diagnosed with PP, and she has her aunt to thank for helping her find out what her diagnosis was.

“We say she’s the guinea pig,” Tori told me as she laughed. 

Having suffered from a mysterious illness for years and misdiagnosed repeatedly by doctors, Tori’s aunt relentlessly looked for answers until she discovered that she had PP. It turned out that several other family members had PP too, and doctors described it as a Variant of Unknown Significance. Tori’s cousins, her aunt’s children, are the only other young adults she knows of who have PP. They only have mild symptoms, but Tori wasn’t as lucky.

It all started when she was 16. She loved activities such as running track, horseback riding, and other sports. But she started getting stomach cramps after running. Her peers thought it was just normal discomfort, not a huge problem. Unfortunately, her symptoms became more severe as more time went on. Her pain and weakness forced her to become less active in doing the sports she loved so much.

As Tori grew older, her symptoms became worse. She would have episodes of pain and paralysis that caused her to have to go to the hospital more and more frequently. She put it bluntly:

“It’s kicking my butt.”  But she wouldn’t wish it on anyone. “I wouldn’t want to put this burden on anybody else but myself.”

Tori’s PP episodes are triggered by multiple things. One example of a trigger is eating the wrong kinds of foods, such as carbs and sugar. But the biggest trigger for her is stress. Tori is stressed out by normal everyday things that most people go through, but she’s also stressed out by the unusual experience of having a rare genetic mutation that wreaks havoc on her body.

She already had anxiety before being diagnosed with PP, but her anxiety makes her PP worse.

“I used to just let my anxiety run away with me, and I would literally let it control me.” Tori said. 

I asked her if she had found any ways to manage her stress and anxiety. She mentioned that walking her dog is one of her favorite ways to calm down. In the mornings, she likes to get a good start to the day by drinking smoothies and doing gentle stretches that don’t overwork her body.

Another one of Tori’s favorite hobbies is painting.

She showed me a couple of her paintings, and I was impressed! Her paintings showed closeups of female bodies in vivid, bold colors. Her face lit up with a big smile while she showed me her art, and that to me was a powerful reminder that even for people with debilitating diseases, there are still ways to find joy in life.

Tori’s positive attitude has carried her through all the ups and downs of this rollercoaster ride of a disease. She explained that she has been going to the hospital more and more lately. She’s soon going to have to see a neurologist and psychologist even though she’s never had to see those kinds of doctors before.

Visiting doctors has often been a difficult experience for Tori because of how rare her disease is. When she has a severe PP episode and she has to go to the hospital, doctors sometimes wonder if she’s intoxicated or on drugs. Doctors don’t always take her seriously because they don’t truly realize what’s wrong with her. She vented to me what she wishes those doctors would understand:

“I’m not here because I want to be here. I’m not here because I have nothing else to do. I’m here because I need to feel better.”

Thankfully, Tori’s mom has constantly advocated for her in the face of skeptical doctors, trying to explain Tori’s disease to them. Even in more recent times when her mom hasn’t been able to accompany Tori because of COVID restrictions, Tori is learning more and more about how to advocate for herself and talk about her disease. However, the doctors often don’t know what Hypokalemic Periodic Paralysis is. Tori told me the scary thing that some doctors say to her after learning that she has PP:

“Oh, we had to go look it up on Google.”

Tori said that she feels frustrated that so many doctors are clueless about PP. She knows there is a lack of information in the medical community about it. When I asked her what she wished the medical community would do, she gave a very clear answer.

She simply wants doctors to trust their patients. 

She knows what it’s like to suffer from a rare disease that confuses doctors and causes them to misunderstand and doubt her. In order for that to change, there has to be trust. She finds comfort in going to the same doctors repeatedly because once they get to know her, they become better at trusting her and treating her.

Tori wasn’t done with her advice. She also had advice for her 16-year-old self.

“Be happy with the body that you have, because it could be a lot worse.” 

I really loved her positive outlook and grateful attitude. There are many people who wouldn’t feel grateful at all if they went through the same things Tori has been through, but Tori is different. She wants everyone to remember to appreciate what their body can do — and that even goes for people with diseases and disabilities. Simple things like walking, breathing, and even waking up in the morning are special.

“My body may slow me down sometimes, but I wouldn’t want another body,” she said confidently.

One big source of Tori’s hope and optimism is the Periodic Paralysis Association, which Tori learned about through her aunt. Tori, her mom, and her aunt were able to go to a PPA conference last year, and about 200 people were present.

Tori felt so good to be around all those people who understood what it felt like to have this rare disease! She was able to get updates on the progress of PP research done by scientists who are working tirelessly to find a cure. She was able to chat with several people, and she learned more about PP and how other people are dealing with it.

But the most interesting part of the conference was when Tori observed that people were having paralysis episodes right there in the room — and no one panicked because everyone was used to it! She felt a sense of relief and comfort knowing that she was finally surrounded by people who saw PP as normal.

Tori sees herself being an advocate for people with PP in the future.

She wants PP patients to be aware of the difficulties they will face in dealing with doctors who treat them coldly and don’t believe they are serious about their pain.

“I feel like a lot of doctors talk more than the patient,” she said. 

She wants patients to feel empowered to speak up more, and she wants doctors to listen more and try to be understanding.

What is her advice to PP patients who are anxious about skeptical, dismissive doctors?

“The doctor works for you. If you don’t like the way the doctor is treating you or is handling the situation, you can fire them. You can find someone better.” 

She talked about how patients need to have high standards, and if a doctor isn’t living up to those standards, the patient can choose not to see them anymore. I couldn’t help but agree.

My conversation with Tori was coming to an end. I really enjoyed getting to know her and hearing about her experiences. This friendly, cheerful, smart young woman was clearly not going to let Periodic Paralysis stop her from feeling joy and holding on to optimism. She showed me how cheerful and sweet she is when she gave a heartfelt message to her fellow PP patients.

“To all of my Periodic Paralysis people, be positive, and love your life. ‘Cause you only have one body and you might as well live it.”

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Update: September 2021

For an update on Tori’s story watch this video from our YouTube channel. Monica, Tori’s Aunt, talks about their genetic testing results.

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