Emma and Intracranial Hypertension...

[Littlebear037]

You're on the same Facebook group as my mom :)

[jennywaldemaras]

Wow. That was touching. I know how much suffering this illness brings to me, an adult. I can't even imagine how much harder it must be to be a child with this cruel illness. I really hope she has many more better days ahead. I hope we all do.

[Oneluck13]

Emma, you are such an insperation. I just turned 26, got dianosed when I was 21. You are a brave girl. If you need anyone to talk to just let me know. You are so beautiful. Stay strong, Sending much love and peace and good health.

[Lvs2dance16]

does emma have a caringbridge

?

[ThePrincessnikki86]

this brought tears to my eyes, i am 25 and live in the uk. ive had iih/ptc for 2yrs now and been through hell and back. there are days i just dont wanna fight anymore. emma ur courage and strength is amazing for a child to suffer this is just awful, I HOPE FOR A CURE XXXX

[jwbckb6]

@ThePrincessnikki86

KEEP FIGHTING!!!!!

Much love to you!!!

[Lilahma12]

I would like to thank you and your daughter for sharing ur story. I too have a 12yr old daughter that suffers from IH. She has her bad days and good days too. Hope for a cure!

[jwbckb6]

@Lilahma12

Thank you for taking the time to watch it!

I am sorry your daughters too suffers like Emmy.... Please stay strong.. and NEVER give up HOPE!

[hlynnz]

@wbckb6 Yes I am a memeber of the support groups on facebook. They help a lot. I pray all is going well for you!

Thank you,

Holly

[jwbckb6]

@hlynnz

AWESOME HOLLY!!!

[renae281]

I am 34, a mom of three. I was diagnosed with PTC in 2003 .I went into remission and now suffer again. I hope for a cure and wish you all the best. I am sorry that you have to deal with this at such a young age. I am just getting back to learning about all the current information and if there is any new treatment or research. I wish you pain free days and hope you get cured or go into a forever remission. : ) Dawn

[jwbckb6]

@renae281 Thank you dawn... i am sorry to hear that your having pain again... sigh:/ Are you on facebook.. there is a HUGE support sytem/group of us... please look it up! Or look me up... Christine McDowell

Much healing sent to you!!!!

[jwbckb6]

@renae281

There is a GREAT support system on FB... you should look it up.... about 500 people strong!

[wjpike1]

I am of mom of 3 and have IH too. I know how hard it is to just try to live a normal life. Watching your video, i can't imagine how hard it would be to try to just be a normal kid. So sorry it has hit you so young :( I have a little guy with Type 1 Diabetes. Your pics reminded me of what he has to deal with too. It's hard for us moms to watch our kids have to suffer too. Hope you and i and he can find a cure some day. Keep fighting and shining.

[jwbckb6]

@wjpike1 Thank you.. and i can't imagine being sick with IH and having children to take care of as well!

Much love and healing being sent to strong to you!!!

Christine

[Lvs2dance16]

i am 21 and was diagnosed age 17 , i got for my first icp monitor tuesday and have a lp shunt. how has emma been doing?

[jwbckb6]

@Lvs2dance16 HI!

Emma is doing pretty good... *KNOCK ON WOOD*... she still has bouts of nausea and headaches but NOTHING compared to Pre-shunt..... one day at a time!

HOW ARE YOU DOING?

Keep fighting the fight!

Christine

[jwbckb6]

@Lvs2dance16

HI! Thank you reaching out to us! She is doing Pretty good *KNOCK ON WOOD*.... back in school and loving be "normal" for a while!!!!

Much healing sent to you!

[Tricialeigh55]

She is a Beautiful young lady... I have a friend who also suffers from IH and I can't imagine the pain, fear and ongoing treatment she needs. I pray they find a cure quickly and Emma, lives a happy wonderful full life ! 

[jwbckb6]

@Tricialeigh55

Thank you for your kind words!

There is a HUGE support group on facebook if your friend is interested.. they are truly or life-line....

Much strength being sent to your friend.. this is a beast of a Brain disorder:/

Christine

[monicup23]

Emma has the most beautiful smile and a spirit that shines so bright even through simple photos- I have IH and watching this video reminds me that even through so much pain, a person can brighten the world around them immensely. It is hard to remember when you are seeing everything from the inside of the pain and feelings of worthlessness. Wow, thank you Emma for being such a shining example to this 33 year old...of an inner beauty that overflows to the outside!!! MUCH LOVE to you sweetie. :)

[jwbckb6]

@monicup23

THANK U FOR YOUR KIND WORDS... i will pass them on to Emmy!

[jwbckb6]

@monicup23

"thank you so much!!!" per Emmy!

[angel159837]

How old is she now? I am 12 and i have ih and i would love to talk to a kid my age please get back to me

[jwbckb6]

@angel159837 HI sweetie! she is 12! We can be reached at christinekmb@yahoo.com

[jwbckb6]

Respond to this video...  She is 12.... Christinekmb@yahoo.com

[angel159837]

@jwbckb6 I will email you

[TroyaE117]

I saw later in the video a mention opf an LP shunt.

I trust that symptoms improved then?

I am very familiar with this condition, and its variations.

Emma clearly is struggling with headaches.

Mine are very mild.

[jwbckb6]

@TroyaE117

Her symptoms have "improved" in a sense... but she is not cured. She still battles with headaches and nausea daily.  She is now on another medication to help the "flow" of csf daily.

[TroyaE117]

That ICP reading of 40 mm mercury is very high. What about the use of a shunt as a defence?

Very best wishes.

[jwbckb6]

@TroyaE117

She has an LP shunt... it was placed Feb 23, 2010.... Her body still produces more than what the shunt can keep up with. although it flows into her stomach... her body STILL thinks there is a tumor, and makes more to protect her brain. Thank you for your wishes:)

[xdmom28]

I have IH. I feel so bad for her. I love the bracelets that you all are wearing. Where did you get them?

[jwbckb6]

Respond to this video... 

[hlynnz]

Praying for her and your family. I have PTC I am 26 and have been dealing with it for almost 9 years. We need a cure!!!

[jwbckb6]

@hlynnz

I am so sorry you to suffer from the beast IH... much love and healing to you!!!!

[jwbckb6]

@hlynnz

I am sorry for you pain... do you have a facebook account.. there is a HUGE support group on there...

Much healing to you!

Christine

[monkeynut1997]

So much love to you<3

[ravenmom5]

Wonderful video!

[jwbckb6]

@ravenmom5 THANK U!!!!

[IHateIH]

There is no cure for 100% of the people. Octreotide has worked on SOME people and put them in remission, BUT it does NOT work for everyone. I know MANY people that have tried Octreotide and it didn't help at all. It may be a viable option for some, but by no means is it a cure for everyone!

Emma ~ You are such a STRONG and WONDERFUL young woman!! I have been a friend of yours for some time now and have watched you go through so much. I applaud! Stay strong, Sweetie! You're an inspiration!!

[jwbckb6]

@IHateIH XO!

[IHateIH]

@jwbckb6 XO! For Christine, Emma and Sydney!

[vickiTauthor]

Brilliant Video Christine, you and Emma are so awesome and a never ending source of inspiration! Love you! xxxxxxxx

[TheKeeley86]

hiya hun, please have a look at my video - there is a cure!.... people just dont know it yet! hope she goes on ok in getting her cure - i suffer from this myself so i know exactly how she feels xxxx

[Rachael2o1o]

bless Im also a mum of a child with IIH she had never been ill in her live but within 3 weeks her life and ours was turned upside down please please support IIH. Thankyou. Karel

[jwbckb6]

@Rachael2o1o

MUCH LOVE BEING SENT YOUR WAY!

[Mamascherubs]

<3 Beautifuly done..... ily Emma!!!

[jwbckb6]

@Mamascherubs

OXOXOXO