Let There Be No Doubt…

…about how serious Intracranial Hypertension and the group of related/associated conditions I refer 15482560-brain-pain-in-blackto as Intracranial Pressure Dysregulation Disorders (ICPDDs) are.

The toll they take on aa patient’s function and quality of life.

Or, if left untreated, the threat they pose to your life.

Ever heard the term that something “crushes your spirit”?  Guess what.  That is quite literally what ICPDDs can do.

I’m taking a brief moment from preparing the Celebration Ceremony for my wife Trina.  We were a couple that shared this rare disorder.  I know what happened to here.

In the name of trying to create a new sense of urgency in the medical community and remove any doubt that ICPDD patients need early, definitive, and meaningful intervention, I will be focusing in the near future on how elevated ICPs physically affect the brain as well as the potential results.

Trina died as a result of being afflicted with a rare disorder at a time when it is just being recognized by Medicine, when physicians who dared step in and treat her are few and far between, and resources are equally scarce.  Despite active promise of help, time just ran out for her.  Make no mistake: she was no quitter.  She was as tough as they come; she endured things that would have easily broken me.  The fact that it her condition ultimately took her from us is stark testimony to how seriously these conditons need to be viewed.

ICPDDs need to be seen in from a new point of view, and in Trina’s memory and honor, it is now my life’s work to answer this call and help all of us.  For now I mourn, but ShuntWhisperer.com is about to become very real.

May God Bless Us All.

 

2 thoughts on “Let There Be No Doubt…

  1. I thank you for helping others see this disease for what it is..I have three children who suffer from this devastating disease and I appreciate what you do! I am so sorry for your loss..This disease shows no mercy and there is never real hope of relief..my youngest is now having vision loss again and of course all the other pain issues…its looking like I may have to pull her out of school again just like last year her and her brother had to leave school for six months…I want them to live a normal life they are all brilliant social love school! This disease is so unfair something I know you understand more than anyone…May you find peace and again THANK YOU!

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    1. Cysndria, somebody should be asking why you have three children with this disorder. It is considered rare, and the reason for your children to all suffer from it may provide clues to at least one cause. Prayers to you and your family, and thank you for your kind words.

      Like

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