My Rare DiseasesPeriodic Paralysis, Recurrent Meningitis, Hypermobility
My Rare Diseases
Recurrent meningitis is the first rare disease I learned I had. My first hospitalization with viral meningitis was when I was 21, and I was diagnosed with recurrent viral meningitis on my second hospitalization when I was 32. We have found that even between episodes that require hospitalization I also have daily symptoms of meningitis.
The second rare disease I learned I have is periodic paralysis. I started having regular paralysis attacks when I was 39. The diagnosis for my type, hypokalemic periodic paralysis, was given at 41. We are still researching to verify my specific subtype(s). The possibilities are still Andersen-tawil Syndrome (ATS) and Paramyotonia Congenita (PMC) based on my symptomology. Looking back I have shown symptoms my entire life, and had my first paralysis attack at age 15, but since they only occurred yearly or less it never got looked into further.
We have recently discovered that I am also hypermobile. That means my joints are more mobile than they should be. This also points, along with my other symptoms, to a probably connective tissue disorder. This is something that we are looking into as well.
Check out the resources below for information on my rare diseases and rare diseases in general.
Periodic Paralysis Resources
Periodic Paralysis Association
The Periodic Paralysis Association is a Non-profit Charitable Corporation founded to foster awareness of the periodic paralyses, promote science-based information regarding this class of disorder, and champion the interests of the Periodic Paralysis Community.
Periodic Paralysis International
We are mission-driven, independent and not-for-profit. Our website reflects our mission to make medically accurate, up-to-date information about the periodic paralyses accessible to patients, caretakers and physicians. Our goal is to help create successful partnerships between physicians, researchers and periodic paralysis patients in order to speed diagnosis and improve therapy and management strategies, thereby improving quality of life and clinical outcomes for patients.
Recurrent Meningitis Resources
Recurrent Meningitis Association
The Recurrent Meningitis Association is using advocacy through research to support those with the rare disease recurrent meningitis. The Recurrent Meningitis Association is a non-profit 501(c)(3) corporation advocating for recurrent meningitis globally.
Hypermobile/Connective Tissue Disorder Resources
The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions.
Rare Disease Resources
Global Genes® is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.
National Organization for Rare Disorders (NORD)
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
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