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Hi, I’m Michael!
Hello and thank you for coming to learn about my story. I live in Idaho and am working to adjust to living life with my rare diseases. We now know that I have at least two, periodic paralysis and recurrent meningitis. I spend my days living and fighting the effects these known, and unknown, diseases have had on my life. I am currently looking into structural issues including Intracranial Hypertension, Cervical Spinal Stenosis, Craniocervical Instability, Chiari Malformation, Atlantoaxial Instability, and Tethered Cord Syndrome. I am also researching genetic variants I obtained from Whole Genome Sequencing (WGS) and Whole Exome Sequencing (WES) genectic testing I had done to try and see what matches my symptom profile and may be causing all of my symptoms.
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. My diagnosis, periodic paralysis, was given at 41. We are still researching to verify my specific subtype(s). The possibilities are Hypokalemic, Andersen-tawil Syndrome (ATS), and Paramyotonia Congenita (PMC) based on my symptoms. 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 probable connective tissue disorder likely Ehlers-Danlos Syndrome due to genetic results and symptoms. This is something that we are looking into as well. This includes possible structural issues with my spine that seem to be related to these issues.
Check out the resources below for information on my rare diseases, and rare diseases in general.
Rare Disease Information
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.
Global Genes’ story began with our loved ones. We are the friends, family and supporters of patients close to us who are affected by rare disease. We understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. And we know we aren’t alone. That’s the reason Global Genes was born – to connect, empower and inspire the rare disease community.
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.
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.
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.
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.
Top Gene Variants I Am Researching
These are some of the top genetic variants discovered during my Whole Genome (WGS) and Whole Exome Sequencing (WES) testing.
Likely Pathogenic Variants
Variants of Uncertain Significance (VUS)
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