Finding more support online for IH sufferers
If you’re looking at finding more support online for IH there are a number of existing resources. However there are some considerations to take into account.
Firstly, this illness suffers from an amount of mis-understanding, so some resources may be out of date or have limited information. Ask your doctors where they might look for more information too.
Secondly there are also people who claim to have IH through self-diagnosis. This is a complex illness diagnosed through a process of elimination. It is not a doctors first choice during diagnosis. Make sure the people you’re talking to have either been diagnosed with IH or are a medical professional working in sleep. There are many illnesses which look like IH, or which have EDS has a symptom. IH is more than just EDS.
Lastly there are also people who claim to have cured their IH. Some people are able to manage their condition through diet and exercise, but it is not necessarily in remission or cured. Others just live without medication too. Those that have resolved it may have had a secondary hypersomnia; addressing the primary illness should sort the secondary hypersomnia.
In addition, there is just ONE paper from 2007 that talks about patients with IH going into remission. Clinicians do see some people who go into remission but it is not well documented and the reasons are unknown. It would be useful to see much more data on patients that go into remission.
English language resources online
Another way finding support online for IH sufferers is with the various online organisations.
The first two here are the “Gold Standard” of Idiopathic Hypersomnia support sites.
Hypersomnolence Australia (HA) – Started and run by a fellow Idiopathic Hypersomnia sufferer. The site has a wealth of well-researched information and flyers too. In 2013 HA established the annual worldwide Idiopathic Hypersomnia Awareness Week (IHAW). HA encourages individuals and other organisations to join them in the first week in September, and this event grows yearly.
HA does not receive any funding or grants and does not charge membership. They appreciate donations through Paypal to help them provide a worldwide platform for IH awareness and advocacy.
Well worth starting here.
Hypersomnia Foundation – This is the premier American organisation set up to promote research into the cause of IH. They are well organised and now support patients much more. They present around the whole of the USA to both patients and medical people.
HF have a very strong research focus and a link to Dr David Rye, one of the key researchers into Hypersomnia disorders.
UK only
Narcolepsy UK – this is the main UK Narcolepsy charity who provide support for IH patients too. They are well led and organised and do a good job supporting Narcolepsy patients in the UK.
They do not actively promote their support for IH, and have little IH information. However they are a fellow hypersomnia organisation, and have much to offer.
They also have a very good support line that can provide information to help with a PIP/UC application. Their Helpline Advisors are very knowledgeable and understanding. If you have a benefits issue they are a very good point of contact, but you should contact them early in your claim process.
Reddit is an information-sharing platform that uses “SubReddits” as community groups. It can be used via the web or various apps.
You will not be able to get a “diagnosis” on Reddit, but there is lot of information there. Neither SubReddit allows people to spread false or misleading information, though people do try, so the quality of information is quite good. The mods are active and in most cases understand the illnesses personally.
The Narcolepsy group also has posts regarding IH and has about 7x as many users.
Discord
Discord is a web-based chat platform. You will need to download the app if you wish to use it on your phone or laptop. The community is global so you will see issues worldwide, but it is a friendly and welcoming group and well run. This group is linked to the IH SubReddit.