IH Is A Rare Disease
Intracranial Hypertension is a rare disease.
A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000.
A disease or disorder is defined as rare in the USA if it affects fewer than 200,000 Americans at any given time.
This is a significant piece of information because rare diseases, for obvious reasons, do not receive the same kind of attention and, more importantly, research funding as more recognizable ones. This leaves patients with limited treatment options and knowledgeable professionals to help in their time(s) of need.
IH is Life-Altering
As most chronic diseases, Intracranial Hypertension is an everyday presence in each patient's life. The symptoms include:
- severe headaches and pain, in general,
- nausea and vomiting,
- pins and needles (more like invisible evil elves stabbing me with knives, but, in general, you get the idea), and
- visual disturbances (black outs, sparks, double-vision, visual auras, etc).
The problem with all of these symptoms is that every single one is invisible. I have to be honest, before I was hospitalized and diagnosed I was getting pretty worried that I was losing my mind! I looked fine to everyone else (until I started grimacing from pain or squinting from vision) and felt worse than I ever had in my whole life. This is a common complaint I hear from fellow IH-ers, as well. Even now, everyone I see can't wait to tell me how amazing I look and I'm sure, to many, it is a sign that I must be so much better, but this disease is tricky, invisible, painful and extremely lonely. We look like we can do all of the things we always could do before, but sometimes that pain is just there. Life has changed, we must adapt. We'll do things, just do them differently. IH-ers better than me have continued in their day-to-day with amazing adaption (I did that for too long with my crazy spastic colon - once IH got added to the mix, my days of deception were over!).
The Cause(s) of IH
Intracranial Hypertension is an increase in pressure in your head due to CSF (cerebral spinal fluid). You see, everyone has CSF flowing in and out of their heads all day long - it's a natural body process. Those of us with IH either make too much CSF or our body just doesn't get rid of it fast enough! The jury seems to be out on which one of those it is. Either way, it leads to all of this fluid in your head, squishing up everything because it doesn't seem to know where to go! I have what is called Idiopathic Intracranial Hypertension, where "idiopathic" stands for unknown origin. Some people can get Secondary Intracranial Hypertension as a result of a number of different conditions or diseases.
I think it is very important to note that IH can happen to anyone. While there is a prevalence in overweight woman of childbearing age, I am heartbroken to inform you that there has been findings in children (I really, really, really don't like that idea AT ALL), women of all shapes and sizes and even men! I worry that the idea that it is only prevalent in one particular group leads to many going undiagnosed for far too long!
IH NEEDS YOU!
My ultimate reason for writing this post today is to spread the word about Intracranial Hypertension. The IH community needs everyone to know a little bit more about our disease and to get some buzz going. Right now the treatments for the disease lead to more side effects that still make day-to-day existence not so bearable.
Here are some suggestions for what you can do for IH this month (did I mention September is IH AWARENESS MONTH?!):
- Donate to IHRF - The Intracranial Reseach Founation is the only non-profit in the world devoted to supporting medical research for chronic Intracranial Hypertension (in other words, THEY ROCK!!).
- Check out the IHRF Facebook page to see the wall of faces of IH, just to get a feel for how many people can be affected by a "rare" disease.
- Read a Book Where the Lead Character has IH - I truly can't say enough about "Excuse Me, My Brains Have Stepped Out" by Pandora Poikilos, but go ahead and follow the link if you want to read my review!
I wish you pain-free days, and if you are new to this mysterious club and stumbled upon this post on your quest to find answers, please do not hesitate to e-mail me with your questions. I remember the initial months of my quest for answers, for anyone in the world to know what I was going through. We out here, all over the place! YOU. ARE. NOT. ALONE.
Think IH on Rare Disease Day
A World Without Books