Happy Idiopathic Hypersomnia Supporter Appreciation Day! We join our Facebook community on May 1st and celebrate this special day by honoring those who make the world better and make life possible for those with IH.
Sometimes we just need an ear to listen, a heart to understand, and a hand to hold. Thank you for being that person.
Your support matters to me more than I can put into words and makes my life brighter!
Being a person with idiopathic hypersomnia (IH) has more than its daily challenges to manage. Those challenges are further complicated by the fact that this disorder of the central nervous system is invisible to those who are not aware of the symptoms that people with IH face throughout the day. Not having access to effective treatment(s) can make those challenges all the more daunting at times. Even with treatment, there are good days and not so good days. Through it all, people with IH are surrounded by the love, care, and support of those who understand what their lives are like at this time and how to help them meet their needs. They are the special people who can make those days better and tough times easier. They are also the ones who understand the importance of patience to make the relationships work and the importance of a positive outlook to keep moving forward.
We join our Facebook community on May 1st and celebrate this special day by honoring those who make the world better and make life possible for those with IH. We salute the loved ones—the spouses, partners, significant others; the family—the children, parents, grandparents, guardians, sisters and brothers, cousins, and aunts and uncles; the dear friends, neighbors, associates, and colleagues; and the online and in-person support groups for people with IH.
For those whose loved ones are not able to provide support at this time in the way support is needed, patience and time may help change that, along with the support of the Facebook community of people with IH. In addition, one’s personal community of support is growing broader every day. The Hypersomnia Foundation is established and is here to provide education and advocacy and to support research. The Foundation’s conference this July will bring together many professionals, including renown physicians, scientists, researchers, and attorneys, as well as educators and disability specialists, to provide information and the most current research findings. Many volunteers are working behind the scenes to make it all happen. The conference is also supported by sponsors, as well as underwriters and donors, who believe in the power of research and making a difference in the lives of people with IH.
This past weekend, CNN’s Vital Signs: Tired All the Time? aired and brought attention to IH in an unprecedented way. The first industry-sponsored clinical trial for a new drug to treat IH is currently taking place.
We have so many people to honor and so much to celebrate in our community!