- Hypokalemic periodic paralysis
- Interviews
Cat's interview
How did all start?
Genetic condition. First diagnosed when I was 2 years old.
Do you already have a diagnosis? How long did it take you to get it?
I was affected by the condition at an early age and due to my father and brother already being diagnosed, it was quick to diagnose me as well. Genetic testing has confirmed the condition.
For what medical specialties have you been treated? What has been the most useful specialty for your?
There is limited medication for the condition. I take Sando K, slow K and have trialled various diaretics. Each medication will not be able to stop progression of the condition but can provide some stabilisation.
What has been the most useful thing for you so far?
My dad went on a medical trial for dichlorfenamide, a tablet which is normally given for a different condition. This was really successful and my brother and I also trialled this tablet following. This has been the only medication to prevent muscle weakness through the week and provide lasting stability. The medication has now been taken off the Uk prescription list so we do not have access.
What have been your biggest difficulties?
I find the variability of the condition difficult. I can have ‘good patches’ where I experience less muscle weakness and fewer occasions of paralysis. But then can go into a bad patch. Where no matter what I do I can have paralysis or sever weakness everyday. I also find it difficult that the condition is not ‘visible’ so you need to actively make people aware of the reason why you can’t walk normally or make it up some steps or why you need to use the disabled toilet.
How has your social and family environment reacted? Have your social or family relationships changed?
My father and brother provide support as they have the same condition. My mother has a lot of guilt for having children with this condition which I find difficult to deal with. I am lucky to have a solid group of friends who I have grown up with but I think they often forget my condition so have troubles with activities that are arranged or going out together!
What things have you stopped doing?
I find any physical activities difficult. It is a hard balance of not too little and not too much. I rely on my car to get around as walking too far can be difficult, and I struggle with steps. However on a good day I will try and be as active as possible and love to be outdoors socialising.
What do you think about the future?
I am scared about the progression on my condition. I can see the ‘future’ in my dad as he has the condition. He is unable now to really walk and uses a wheelchair most of the time. It’s difficult to know I cannot really stop this from happening in my future.
So far, which years have been the best years in your life? What have you done during them?
A couple of years ago, through my current relationship and through therapy I have tried to become more accepting of myself and my condition and be able to speak about it more openly. I have gained a lot more confidence in myself. Since then I have started to relax about other people’s views or opinions and it has allowed me to live a fuller life.
What would you like to do if you didn’t have your condition?
Walk without over thinking it
If you had to describe your life in a sentence, what would it be?
Happy but maybe more awkward than others
Finally, what advice would you give to a person in a similar situation?
Try to normalise your condition with others. Try to talk openly about what you go through. Often it is ignorance that impacts people’s opinions so try to open people’s minds and educate them :)
