Making Connections
One experience that is all too common among IH patients is the feeling of isolation because IH is a "hidden" disease. Not just invisible, but hidden -- there's no test to point definitively to its existence. Instead, a telling sign is that all the tests come back normal. There's no specific IH patient profile, as people of all ages, races, and gender are susceptible. Very little is known about IH, even among the professional medical community. Because of all this, many IH patients find that they are disbelieved when they share their symptoms and sufferings; many lose even their closest friends and family members, who get frustrated because they don't understand what the IH'er is going through or how to help.
Finding a community is important. Often, it can mean the difference between learning to live with this disease and falling into deep depression. We have listed here a few communities that we have personally found helpful, not just for IH'ers but for families and friends as well. You are not alone. You are loved.
The IH Research Foundation
​​
​This is the best resource for information and news on IH, research, symptoms, and how to care for the IH'ers in your life. The only IH research foundation in the world, IHRF is worth its weight in gold! ​
Visit them at IHRFoundation.org
The IH Awareness Project
​
​Are you on Facebook? Join The IH Awareness Project to connect with IH'ers, families, and caregivers. It's a public group whose aim is to raise awareness of IH. Lots of love and support in this group!
Visit them by clicking HERE.
The Global Genes Project
​​
This is one of the foremost rare and genetic disease advocacy organizations in the world. Uniting rare disease communities under one umbrella, Global Genes encourages teamwork and unity.
Visit them at www.globalgenes.org
Patients Like Me
​
Share your health experiences, learn from others, and help organizations to learn more about IH. If enough of us make our experiences and symptoms known, this could help find a cure.
Visit www.patientslikeme.com
Ohio Intracranial Hypertension Organization (oIHo)
​​
oIHo helps IH'ers in Ohio with medical bills and transportation to doctors who know how to treat IH, and helps educate medical facilities how to better treat IH and one day find a cure.
Visit them by clicking HERE.
Making Connections
One experience that is all too common among IH patients is the feeling of isolation because IH is a "hidden" disease. Not just invisible, but hidden -- there's no test to point definitively to its existence. Instead, a telling sign is that all the tests come back normal. There's no specific IH patient profile, as people of all ages, races, and gender are susceptible. Very little is known about IH, even among the professional medical community. Because of all this, many IH patients find that they are disbelieved when they share their symptoms and sufferings; many lose even their closest friends and family members, who get frustrated because they don't understand what the IH'er is going through or how to help.
Finding a community is important. Often, it can mean the difference between learning to live with this disease and falling into deep depression. We have listed here a few communities that we have personally found helpful, not just for IH'ers but for families and friends as well. You are not alone. You are loved.
The IH Research Foundation
​​
​This is the best resource for information and news on IH, research, symptoms, and how to care for the IH'ers in your life. The only IH research foundation in the world, IHRF is worth its weight in gold! ​
Visit them at IHRFoundation.org
The IH Awareness Project
​
​Are you on Facebook? Join The IH Awareness Project to connect with IH'ers, families, and caregivers. It's a public group whose aim is to raise awareness of IH. Lots of love and support in this group!
Visit them by clicking HERE.
The Global Genes Project
​​
This is one of the foremost rare and genetic disease advocacy organizations in the world. Uniting rare disease communities under one umbrella, Global Genes encourages teamwork and unity.
Visit them at www.globalgenes.org
Patients Like Me
​
Share your health experiences, learn from others, and help organizations to learn more about IH. If enough of us make our experiences and symptoms known, this could help find a cure.
Visit www.patientslikeme.com
Ohio Intracranial Hypertension Organization (oIHo)
​​
oIHo helps IH'ers in Ohio with medical bills and transportation to doctors who know how to treat IH, and helps educate medical facilities how to better treat IH and one day find a cure.
Visit them by clicking HERE.
Life with Idiopathic Intracranial Hypertension
​​
A public page for IH'ers to share your challenges, victories, and advice with one another. You don't have to have a Facebook profile to read the page, but you will need one to post on it.
Visit them by clicking HERE.
The IHope Foundation
Where HOPE Is Neverending