IH BRAIN PAIN TEAM AWARENESS VIDEO. wmv

THE IH BRAIN PAIN TEAM WAS CREATED TO RAISE MORE AWARENESS OF IH, AND SUPPORT THE IH RESEARCH FDTN.
The IH Research Foundation is the only non profit organization in the world devoted to supporting the medical research of chronic IH. Their mission is to discover why IH happens, along with new, effective therapies to treat the disorder.
Their ultimate goal is to find a cure.
For more information on IH please go to the IHRF website. http://www.ihrfoundation.org




IH is an invisible illness where the person looks fine when they are not!
The Intracranial Hypertension Research Foundation (IHRF), which is working hard to improve the lives of people affected by IH.

Intracranial hypertension literally means that cerebrospinal fluid (CSF) pressure within the skull is too high. Chronic intracranial hypertension (IH) is a serious neurological disorder that can cause severe headaches, vision loss, blindness and life-altering disability.
Anyone can develop chronic IH at anytime in life.
There currently is no cure.
Old names for IH include pseudotumour cerebri and benign intracranial hypertension.
Most people have never heard of it, including many in the medical profession. If more people knew about IH, then patients might get treated with the compassion they deserve!
IH is sometimes caused by an existing medical condition, but it often occurs without a known cause. Idiopathic IH (IH that occurs without a cause) is considered a rare illness affecting 1 in 100,000, though the rate of incidence is as high as 1 in 5000 for some people.
Millions of other people have a condition or disease such as traumatic brain injury, stroke or kidney failure, in which IH can play a role.

There has never been a drug specifically developed to treat IH. Treatment options are limited. For some people, medication can help control intracranial pressure. But for others, the only choice is painful surgery to insert a shunt to drain the excess fluid from the brain. Since shunt surgery only has a 50% success rate, this frequently means many surgeries, with the accompanying risks. If sight is at risk, a person with IH often has to undergo optic nerve surgery to save their vision.

IH symptoms include:
Severe headaches (as if your head is in a vice) ,Vision loss and/or blindness, optic nerve swelling, Pulse synchronous tinnitus, Sore/ stiff neck, Back pain, Memory/ cognitive problems, Fatigue, Malaise, Dizziness, Light headedness, Photophobia, Noise sensitivity.

Chronic IH is life-altering, and robs people of their once happy and healthy existence.
No two cases are the same, making it a difficult condition to manage.

WE DESPERATELY NEED TO RAISE MORE AWARENESS OF THIS CONDITION, PLEASE SHARE THIS VIDEO AND HELP US IN OUR BATTLE TO RAISE MORE AWARENESS. THANK YOU.

If you want to get involved with the IH Brain Pain team or want to get to know other people with IH from all around the world then please check out our Facebook page-
http://www.facebook.com/pages/IH-Brain-Pain-team/118813701483945
We are also on Twitter - @IHBrainPain
or you can contact us through the website
http://www.ihbrainpain.org/

Category:

Nonprofits & Activism

Tags:

• INTRACRANIAL HYPERTENSION

[IHateIH]

I like that this video shows just how "invisible" IH is and how most of us "don't look sick." Yet, we all have our bad days and go through SO MUCH!! The piles of prescriptions, the surgeries, the pain....but the IH community is one that I don't know what I would do without. The people I've met on my journey with this illness are strong, loving, non-judgmental friends that I consider closer than most family.

Everyone that has watched this to better understand what we go through...THANK YOU!!!

[vickiTauthor]

@IHateIH Thanks for your comments. You are welcome!

I am inspired on a daily basis as I see how brave the IH community are in battling this cruel condition.

On a personal note, my husband's courage in dealing with such chronic pain due to IH, never ceases to amaze and inspire me.

I will keep fighting to raise awareness of IH and supporting the IH Research foundation - who are our only hope of one day finding a cure!

Victoria Taylor. xxx

[vickiTauthor]

Thanks! x

[vickiTauthor]

Thanks for all the comments.

@Amberhopefuls the singer is Bonnie Tyler, who kindly allowed us to use her voice for the video.

[vickiTauthor]

Thank you so much for your comments! x

[IHResearchFoundation]

Great job on the video, VickiT! Thank you for showing the faces of IH... thank you to all who are in the video...You are my heros!

[capriceman23]

Thats my brother Chad Z.@ 2:31.....

[Renesmesh]

I have ih I've had surgery and I'm on the medication too and i need more surgery as nothing is working , i live in pain everyday 24/7 yet none knows because i look fine :-(

[stolidnerd]

I'm just commenting to support : )

[Pinkspiderable]

I pray for all of you, My heart is filled with such pain. I wish each one of you a long wonderful life. Hugs and more hugs and thank you for the time you took to put this together,

[spanisheyesri]

Musketman, you are so right concerning some of the medical field not knowing what IH is. Years ago I got so tired of trying to explain it that I printed up the description of what it is off one of the IH sites and carried it with me. I would just hand it to any new Dr. or nurse just so I didn't have to try explain it to them.

What also gets tiresome is family, friends and co workers saying when your not feeling good, oh your ALWAYS sick. As if I want to have my head feel like it is going to ex

[AmandaFox506]

My friend from school has suffered with this for the past 20 years. She is in so much pain, but so brave. She somehow keeps on smiling....

[thefriendsbenefit]

My son has IH and it's a very painful disorder that changes lives. Thank you for this video and all the awareness it brings!

[nanaofabby]

I am 51 yrs old and have had IH since 2002. I have VP shunt. There is nothing more miserable than this rare disease. It is a suffering that only other IHer's can relate to. Imagine a migraine but only 10x worse. I am praying everyday for a cure and have even agreed to donate my brain to the foundation when I die so it will help in their research. In hope of a cure..................Debbie