February 28th is Rare Disease Day.
A rare disease is defined as a medical diagnosis that affects less than 200,000 people in the United States. Rare Disease Day is February 28th, a day to spotlight the millions of people who are affected by rare conditions. Rare Disease Month is observed in February, the shortest month of the year, to emphasize how unique these medical conditions are.
IdiopathicThe term idiopathic is used when there is no detectable reason for something. Click the term to read more Intracranial Hypertension (IIH) is a rare neurological disease that causes high brain pressures with no identifiable cause. It is a spectrum of signs and symptoms that may not completely check all of the boxes of the modified Dandy CriteriaCriteria used for diagnosing patients with IIH. Click the term to read more but benefit from further evaluation and treatment. This condition can cause harmful and potentially irreversible effects of the brain and vision. Common symptoms include vision changes, headaches, brain fog, and pulsatile tinnitusA whooshing or throbbing noise heard in one or both ears that can range from annoying to debilitating. Highly associated with venous sinus stenosis. Click the term to read more to name a few. There is no definitive treatment or cure at this time.
Women of childbearing age are predominantly affected by IIH, though it has been diagnosed in men and in children. Most published information report that women with IIH have a BMIA value derived from the mass (weight) and height of a person. A healthy range is between 18.5-24.9, overweight is defined as 25-29.9 and obese… Click the term to read more of 25 or greater but there are women who have a normal body weight. IIH is underreported and underdiagnosed.
We hope awareness will translate to research and a cure for IIH and for all of the conditions that are still looking for answers and a cure.
We hope that medical care can be equitable and accessible for all. We thank RareDiseaseDay.org for being a leader in providing resources and promoting awareness of rare diseases and for their dedication to Rare Disease Day.
If you would like to share your medical journey through our platforms, click here.
You are not alone.
