Alexandria IIH patient to speak at capital
In early 2012, Jennifer Larson, 38, of Alexandria, started showing symptoms of a brain tumor, but no tumor could be found. For two and a half years she searched for an answer to her illness.
After a visit to the neurology department in St. Cloud last May, the answer came in the form of idiopathic intracranial hypertension (IIH), a neurological condition of unknown cause defined by increased intracranial pressure around the brain without the presence of a tumor.
There is no known cause and no known cure for IIH at this time.
Because of the rarity of IIH, Larson was recently invited to speak at the Minnesota state capital on Rare Disease Day. Tuesday, February 24. The event will include several speakers affected by rare disease, legislators, researchers, and medical professionals.
Rare Disease Day, first observed in the U.S. in 2009, is sponsored by the National Organization for Rare Disorders (NORD). The organization currently holds 30 State House events across the country, hoping to educate state legislators on rare diseases and help aid their decisions on proposed legislation that affect rare disease patients and their daily challenges and struggles.
RARE DISEASE DAY
Minnesota State House Event
Tuesday, February 24
State Office Building
Room 400 North
100 Rev. Dr. Martin Luther King Jr. Blvd.
St Paul, MN 55155
10:30 a.m. to 12 p.m.
See more at rarediseaseday.us/events/events/#Minnesota