To Headbang or Not to Headbang

That is the ITP question.

September marks ITP Awareness Month, and today, September 28, is Sport Purple for Platelets Day.

Jonathan Davis Korn

Think this guy will be sporting purple today?

In my research into the subject of this bizarre roller coaster of a disease, I recently learned that Jonathan Davis from the band Korn had a bout with ITP during his 2006 European Tour, landing in the hospital with a platelet count of 5K. To quote Davis: “If I continued to headbang on stage I could have had a brain hemorrhage and dropped dead on the spot. This has been one of the scariest times in my life.”
I know how he feels. In 2005, I was 4th row center at a Judas Priest concert. Rob Halford had just re-joined the band after being away for over a decade; how could I not be there front and center to cheer, yell and headbang? I remember trying to lift my arms to fist pump, and I couldn’t. I just wanted to curl up on my chair and go to sleep.

I wound up in the hospital the next day with my first platelet crash since my ITP diagnosis the month before. I was at 12K. If the show had been general admission, if I had been, as Anthrax would say, “caught in a mosh”, that could have been the end of me. It was scary indeed.

Our stories are just 2 of the stories out there representing the 200,000 Americans suffering from ITP. Many have chosen to share their stories on the PDSA Personal Stories web page. Yesterday I posted a story about running a 5K mud race with a platelet count of 39K on my new site that some of my followers may not have found yet. It was another exhilarating dip on my roller coaster of ITP and I hope you will take a peek at it, as well as sport PURPLE today! Thanks.

Idiopathic

Red I

Got platelets?

Idiopathic: an adjective used primarily in medicine meaning arising spontaneously or from an obscure or unknown cause.

From Greek ἴδιος, idios (one’s own) + πάθος, pathos (suffering), it means approximately “a disease of its own kind”.

“A high-flown term to conceal ignorance” – Isaac Asimov

“From the Latin, meaning: ‘We’re idiots ’cause we can’t figure out what’s causing it.'”- House, M.D.

Idiopathic Thrombocytopenic Purpura:

Idiopathic: cause not known

Thrombocytopenic: lower than normal number of platelets in the blood

Purpura: purple bruises caused by bleeding under the skin

In simpler terms, my body is fighting a war within. Mysteriously in 2005, it began attacking its own platelets and destroying them. ITP is a diagnosis of exclusion. When doctors rule out every other cause for low platelets, they chalk it up to ITP.

Platelets aid in clotting, so low platelets put you at risk for bleeding. In an adult, a normal count is about 150,000 to 450,000 platelets per microliter of blood. My “normal” seems to hover between 30,000 and 50,000. Under 20,000 is a concern. I’ve “crashed” and dipped under 10,000, which requires treatment (usually Prednisone), and at times, hospitalization.

I’m not going to harp on the disease itself. It is what it is.  Not contagious, not genetic. There is no cure, just therapies to increase platelet counts temporarily. There are some amazing support sites and informational sites out there for ITP, like the Platelet Disorder Support Association. If you or a loved one have been recently diagnosed, I highly recommend the aforementioned site. ITP is a fairly common auto-immune disease, and thankfully most people can live normal, healthy lives with it.

As I sit in my Hematologist’s office, watching people coming and going for various infusions and chemo, I thank my lucky stars. When the doctor is running behind schedule, I never complain. I want to be his least important patient. I’d like to keep it that way.

There is a certain stress, however, that comes with an idiopathic diagnosis. Knowledge is power. Not knowing what causes the problem in the first place leaves you feeling helpless. It is stressful when you realize your body is silently “betraying” you. Not being able to find a rhyme or reason as to why your platelets “crash” one month after being at record highs the month before is frustrating. Many ITP patients “know” when their platelets are low. Obviously if you can play Tic-Tac-Toe by making bruises on your skin, your platelets are pretty darn low. Other people swear they know by the feeling of fatigue, or what I call “brain fuzz”, even though these are not “symptoms”, according to the experts.

So what to do? Give up tackle football. No more tattoos. No gin and tonic (quinine’s a no-no) and stay clear of Ibuprofen and aspirin. Again…thank some lucky stars. It’s not debilitating, it’s not terminal.  After seven years of wrestling with it, I’ve begun to see some ebb and flow. Stress and the controlling of stress (via exercise, yoga, better diet with less refined sugar, more sleep) are the closest I’ve come to establishing a pattern.

There is no antonym for “idiopathic”. But I would be happy with “spontaneous unexplained remission”.