Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Hyperkalemic Periodic Paralysis

What is Hyperkalemic Periodic Paralysis?

Hyperkalemic Periodic Paralysis is a rare inherited autosomal dominant disorder.

 

Hyperkalemic Periodic Paralysis is a rare inherited autosomal dominant disorder.
Acknowledgement of Hyperkalemic Periodic Paralysis has not been added yet.
0.75http://www.orpha.net
Synonyms for Hyperkalemic Periodic Paralysis has not been added yet.
Cause of Hyperkalemic Periodic Paralysis has not been added yet.
Symptoms for Hyperkalemic Periodic Paralysis has not been added yet.
Diagnosis of Hyperkalemic Periodic Paralysis has not been added yet.
Diagnostic tests of Hyperkalemic Periodic Paralysis has not been added yet
Treatments of Hyperkalemic Periodic Paralysis has not been added yet.
Prognosis of Hyperkalemic Periodic Paralysis has not been added yet.
Tips or Suggestions of Hyperkalemic Periodic Paralysis has not been added yet.
References of Hyperkalemic Periodic Paralysis has not been added yet.
Introductions? Created by Cadence79
Last updated 30 Dec 2013, 01:16 AM

Posted by Weins3601
30 Dec 2013, 01:16 AM

Hi, I guess this really is a rare disorder because I'm always looking for websites or forums out there about this to talk to people about, and there is hardly anything, so I'm glad to know there's someone on this forum too! I'm a 24 year old female that is self-diagnosed since high school when I started to research my symptoms on my own for a few reasons. I have dealt with it my whole life - my earliest memory being in kindergarten and not being able to get up after sitting for awhile during story time. I remember the teachers looking at me kind of oddly, but I got really good at hiding it. For me it was mostly brought on during school in the morning when sitting for too long in class. I did my best to fidget and fake dropping my pencil just to get out of my seat to prevent an attack from coming on. I never talked about it or made a big deal out of it, it was just "my legs fell asleep" on long drives or sitting for too long. In middle school, I went to the doctor after an episode that caused me to fall, but of course when I went to the doctor, I wasn't having an episode so there was nothing abnormal about me and the doc just called it "growing pains." I went once more in high school and they did some blood tests, but again, nothing. The doc was clueless. That's when I started to research symptoms and self-diagnosed. The worst triggers for me: going too long without eating, resting after strenuous exercise, sitting for too long, or cold weather. My episodes usually last less than an hour. Sometimes the intensity goes so far as to restrict my breathing/chewing and eyelid motions, but that's pretty uncommon. I do my best when I'm in a routine and I can predict attacks and keep them from developing, but of course life isn't always "routine." When I'm on my own time, meaning I'm not in school or at my job, I can usually avoid an attack because I'm able to get up and move around and handle the episode, but not always. I recently started exercising, and just today, after working out, I couldn't go up the stairs because my legs were so weak, and I couldn't go down the stairs because if I attempted, I would literally collapse from muscle weakness and not being able to support myself. When it happens or I think about it, it makes me feel horrible about myself that I have this, but for the most part I am able to manage it without it significantly affecting my life right now. Of course it crosses my mind when thinking about things such as airplane rides when I'm restricted to a seat for hours, doing physical activity that could be dangerous if an attack occurred, or being in a public situation and having a noticeable attack. My biggest concerns as a young adult is that I do NOT want to pass this on to anyone else, meaning I feel like I won't be able to have children of my own, because a) I would never want to pass on this disorder to another human being and b) I've read that pregnancy can bring on episodes and be quite complicated. Wow, I don't think I've shared this much with anyone. I really don't talk about it all because I've just come to feel like it's "normal" for me and my friends and family wouldn't understand, and not even a doctor has been able to figure it out. I'm glad that this community is here, and I would like to continue sharing! What are some of your biggest daily/common obstacles and how do you deal with them?

Posted by Cadence79
28 Dec 2013, 04:24 PM

Hello, Everyone! I am new to the Rareshare community and just joined the Hyperkalemic Periodic Paralysis Community. I see there are 4 members (wow! small community...) and no forum discussions. I would like to see who is actively involved with this site and community and know a little about them and how they are dealing with HKPP. I am a 34 year old female who was diagnosed (after many, many failed attempts at diagnosis) in 2005 when they episodes I had experienced since childhood became more severe and occurred daily, triggered by stress. I had several EEG's and my neurologist was able to diagnose it based on the myotonia patterns it revealed and the pattern pf symptoms. I take 20mg of furosemide daily to control symptoms, which I have found somewhat helpful but it does not eliminate episodes. Triggers for me are pretty much everything, from exercise, being inactive for too long, stress, temperature, other illnesses, pregnancy and diet. Anyone else care to share...?

Community Resources
Title Description Date Link

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

I am a 34 year old who was diagnosed with HKPP in 2007 by a neurologist after having episodes of severe weakness since childhood. I have 2 young children and have had worsening symptoms since 2005...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Introductions?

Created by Cadence79 | Last updated 30 Dec 2013, 01:16 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.