Tag: rare-diseases

When Awareness Fails: A story of Hope

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#TriggerWarning

I am part of a “Rare” group of people.

IH-ribbon

click image for source

I am 1 in 100 000 people, and I have a Rare Disease.

There are two different kinds: Chronic and Secondary IH.

Intracranial Hypertension:

A short overview-

(IH) is the general term for the neurological disorders in which cerebrospinal fluid (CSF) pressure within the skull is too high. (Old names for IH include Benign Intracranial Hypertension and Pseudotumor Cerebri).- exert taken from The IH Foundation.org

Very little is known about this disease and thousands of people are going without proper care. Many Doctors don’t know enough, add on the fact that there is no cure and things begin to go from bad to worse.

What is IH?

Intracranial hypertension literally means that the pressure of cerebrospinal fluid (CSF) within the skull is too high. “Intracranial” means “within the skull.” “Hypertension” means “high fluid pressure.”

Something goes wrong inside the brain and the normal production and absorption system fails. When this happens the results are devastating.

I was first diagnosed in 2006. I developed  Papillidema, and as a result, I have lost most of my visual acuity.

Symptoms:

The symptoms vary from person to person, but the most common are:

  •  Severe Headaches
  • Pulsatile tinnitus
  • Visions changes, such as: Double vision, Papilladema and sudden vision loss.
  • Nausea (sometimes accompanied by vomiting)
  • Neck and shoulder pain.

Possible Treatments After Diagnosis:

IH is most often diagnosed via a Lumbar puncture. Patients are often given drugs with harmful side effects or dangerous and painful surgery options. 

The Bottom Line:

There is so little awareness and funding for this disease, and there are thousands trying to hold onto hope that a cure will eventually be found.

For more information, please visit http://ihrfoundation.org/