Without awareness, we are lost. Before you knew that idiopathic hypersomnia existed, before you connected your symptoms or those of a loved one with an actual neurologic disorder called IH, you had no awareness. Physicians who have not been taught about IH don’t recognize what is wrong when their patients tell them about their inability to wake to multiple alarm clocks, their struggle with confusion and stupor upon awakening, and their need to fight against the brain fog that saps their ability to work or study. These physicians have no awareness. People who sit on grant review committees but have never heard of IH and don’t realize the devastating impact that it has on people’s lives don’t award research dollars to scientists searching for the clues to unlock the mystery of IH. These people have no awareness. And the bright minds of young researchers focus on other “more popular” topics when awareness of IH is lacking.
On your behalf and that of the hundreds of thousands of people with IH, the Hypersomnia Foundation has launched a campaign to raise awareness among people with IH and related disorders. We have created a brochure for people with hypersomnias that is now available on our web site for downloading and available free of charge for distribution in physicians’ offices. We have sent more than 1500 brochures to more than 100 doctors’ offices around the country. To reach more, we need your help. First, please ask your doctors if they would like to receive complimentary copies of our new brochure. If they do, then please send us the names, email addresses, and mailing addresses of your physicians. Second, we need your financial support to have more brochures professionally printed and to pay for postage to mail them. Your donation in any amount will help. Wouldn’t it have been wonderful if you had seen a brochure like ours in your doctor’s office while you were on your diagnostic journey?
All of our answers to better diagnostic testing, treatments, and cures for IH begin with awareness. We need to raise up our collective voices and shout from the mountain tops that idiopathic hypersomnia is real, that we deserve respect and better treatment, and that we demand answers from the scientific community. Won’t you help us today to raise awareness and find the key to unlock the mysteries of IH?