…about how serious Intracranial Hypertension and the group of related/associated conditions I refer to 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.