Learn more about Homozygous Familial Hypercholesterolemia, also known as autosomal recessive hypercholesterolemia (ADH) from the CheckOrphan Rare Disease Database.
You haven’t slept for what feels like an eternity, coffee cannot keep you awake anymore even after drinking the strongest espresso you can brew – you are sleep deprived.
A while ago you finally manage to fall asleep and all is peaceful; the next moment you are awake again and are unable to move. Hallucinations occur and it seems you are going nuts – funky things are happening.
“A 2011 review of studies published in Sleep Medicine Review revealed that 7.6 percent of the general population experiences sleep paralysis at least once in their lifetime. It’s even more common in students — a population not surprisingly sleep deprived — at 28.3 percent. The percentage is even higher in people with psychiatric disorders, at 31.9 percent, and particularly high in those with panic disorder: 34.6 percent.” – Liz Zabel, The Gazette.
Funky things happen because with sleep deprivation, our bodies do not enter the REM (rapid eye movement) state, the most restorative sleep cycle, vital for a good rest. And if a REM cycle is interrupted – you waking up suddenly for example – it can result in sleep paralysis. What happens is while the brain is awake and active, the body is still ‘asleep’, and you cannot therefore move. The brain then can start producing visual, auditory and in some cases physical hallucinations.
Dr. Mark Eric Dyken, a neurologist at University of Iowa’s Sleep Disorders Clinic, explains that to enter REM sleep it takes 60 to 90 minutes, if you are sleep deprived however, the body “nose dives” into it. The paralysis is “a natural process of REM that keeps you from acting out your dreams”.
According to Dr. Dyken, the disorder is linked to narcolepsy, yet one can experience it at least once in life, in particular if one is sleep deprived. This disorder is not widely known, due to the stigma associated with its symptoms.
Dr. Andrew Peterson, medical director at the Eastern Iowa Sleep Center, advises trying to get better sleep, reserving enough time for sleep – 8 hours if you are 25 and older – and keeping a routine of going to bed and waking up at the same time each day. There are antidepressants and other drugs that can help, none without side effects.
Here we explain all you can do at checkorphan.org in order to make the most out of our services.
Stay up to date. A very important feature of CheckOrphan’s platform is the daily news. CheckOrphan is the largest source on the web for rare . Every day we comprise news involving the rare disease community from a great variety of sources and post them on our website.
Expand your network. Send your content to the following email addresses and we will publish them on our website and/or blog:
The news articles and press releases will be published on the next edition of our daily Newsletter and reach hundreds of people.
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Submit your events to CheckOrphan to help attract more attendees. Also contact us at firstname.lastname@example.org about our free media partnership to help promote your event more effectively.
Find more information about a rare disease you are interested in here. CheckOrphan’s rare disease database has nearly 7000 rare diseases. Through each page, we offer information regarding the diseases’ symptoms, available treatments, causes, etc. Each disease page is also linked to related news, events and research.
Learn more about a rare disease here.
CheckOrphan also has organizations and treatment.
Companies can add their products or update a product page in the treatment section of our website. This section is a window to find treatment options for various diseases.
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We are also very active in different social media platforms. Connect with us to expand our network and create awareness about rare diseases among your friends too.
Projects & Campaigns
At CheckOrphan, we keep moving and evolving. Be a part of it! We are currently working on Make a RareIMPACT, an ongoing campaign to get as many Rare Disease Pages as possible sponsored.
My name is Rob Derham, Founder and President of CheckOrphan (501c3 non profit). Are you ready to make a difference for RARE DISEASES by challenging me “Rob”?
From February 14 – March 17 in honor of World Rare Disease Day (February 29): If your network of people can raise more donations than all other participants in that period – then you will win an Apple iPad 3 and be highlighted in the news!!
Get started – How “I Challenge Rob” Works
If your network raises the most funds through any combination of donations or rare disease page sponsors , you will win the following:
Celebrity / Politician / Nobility / Sports Figure Category
Entities (One Winner from each of the 4 Categories mentioned above)
How “I Challenge Rob” Started
The “I Challenge Rob” campaign unfolded after talking with some friends about how we can make a further impact for rare disease. A couple of them responded to my challenge by offering to raise more funds through their network of people than through mine. With each of us having a passion for rare disease awareness and wanting to make a difference in the rare community, the concept of “I Challenge Rob” was created.
About Rare Diseases:
As the Founder of CheckOrphan, I am deeply affected by patients, researchers and many others in the rare disease community who are neglected by the media and society due to the fact that individually, rare diseases do not affect a lot of people. However the reality and results of isolation and neglect to communicate the needs of the rare community greatly impacts the care and treatment options available to those whose life is changed forever by a rare disease.
IMPACT – facts about rare diseases
That’s why we need YOUR voice! The Rare Disease Community needs the power of communication and knowledge to make a difference in the health of their lives. CheckOrphan gives everyone the opportunity to communicate what they are doing for the rare disease community by allowing them to submit news, videos, links, events and more. CheckOrphan is solely dedicated to promoting and informing the world about their needs and offering unique solutions that help them along their path to a cure and a better future for us all.
How Will The Campaign Funds Be Used?
Thank you for joining the cause!