Hereditary geniospasm is a movement disorder that causes episodes of involuntary tremors of the chin and lower lip.
Hi there, i was an early poster on experience project. I do not have Geniospasm however my Husband (he was adopted so unsure of his family history) and two of my sons do. It became a problem when my first son (now 9) developed teeth and started biting his tongue at night, he eventually grew out of it. My youngest son (19 months) has recently started to wake up crying with a bloody tongue, i have lost count this night how many times i have been woken and tried to comfort my little man, such an awful thing as it is so painful for him! not to mention my lack of sleep which is affecting the whole family too! it can happen every twenty minutes or so then he might get a few hrs sleep before doing it again. Has anyone had this problem and found anything to help? a couple of medical articles linking Geniosppasm and nocturnal tongue biting suggest the tranquilizer Clonazepam. with a looooong list of possible side effects including depression etc i hesitate to suggest it to the Dr and wonder if this is my only option for him. Any suggestions/experiences?
Look forward to hearing from you. As for the chin tremors, they dont seem to bother my boys or husband at all really, it is just a unique part of them which i love. My nine yr old calls it his party trick. Hopefully this side of things remains a non-issue for them through teen years.
I took part in a similar site called "experience project", but it has closed. I enjoyed reading all of the peoples' posts who shared their experiences of geniospasm. I see that this geniopspasm community site is quite inactive. Is there a more active site? The condition is rare, but still lots of people worldwide who shared theuir experience on experience project, both negative (sadly many negative) but, like me, also positive. Mainly from the States, but some from Europe too.
I would be intersted in sharing my experience along with many members of my family who also have it, including my nana, mum, aunties and my daughter.
Look forward to hearing from any of you
I meet with my neurologist Thursday, for something else. Maybe, I'll mention to him, but he just found out about geniospasm from me.
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.
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.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
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.