General Guidelines For Managing A Sick Child

I am looking at an image.

It is a scan of a single page photocopy of an informational handout of unknown origin.

It is titled "General Guidelines for the Management of a Child with ITP"

In all likelihood, it was among the first documents that Maman received

from healthcare professionals after my diagnosis in 2001,

and it appears to be directed at schoolteachers.

It’s a little bit outdated.

Most notably, ITP is now called ‘Immune Thrombocytopenia’

rather than ‘Idiopathic Thrombocytopenic Purpura’,

and there are more treatment options than two decades ago.

Writing in 2019, I had an ITP diagnosis for 18 years now.

Research from 2018 estimates that immune thrombocytopenia

is found in 8.8 out of 100‘000 children.

The same research also finds that in 25% of ITP cases,

the condition becomes chronic, persistent: it simply does not go away.

New diagnosis: Chronic Immune Thrombocytopenia,

found in 2.2 out of 100‘000 children.

I am one of the few whose "benign disease" turned into the chronic form.

In the first months of treatment

from August 10 2001 to May 14 2002,

I received

• steroids,
• intravenous immunoglobulin (IVIG),
• 51 blood tests,
• Prednisone,
• Rho(D) immune globulin (RhIG)
• Dexamethasone,
• a bone marrow biopsy,
• and had my spleen removed.

After which,

I took penicillin

daily

for a decade.

Treatment is still only palliative,

meaning that my doctors manage my symptoms

but do not seek a cure.

My ITP is always around, and anytime my immune system is activated,

it seeks out and destroys my platelets.

I’m struck by the particular choice of words in the pamphlet: "benign disease".

Medical conditions are called benign to suggest they are not dangerous or serious.

Benign can also mean kind, or kindly.

As if auto-immunity were ever benign.

Auto-immunity is endlessly alienating and confusing.

As a kid, I understood logically that I ‘was sick’ and might someday ‘get better’,

but was wholly unequipped to deal

with the emotional and psychological repercussions

of living with a body that may or may not be bleeding at all times.

Think of it this way: my body is a black box and my veins are Schrödinger’s cat.

The handout has a very limited definition of ‘life-style’

but does capture the restrictions imposed by ITP.

Immunosuppressed to avoid self-destruction,

and no ‘bodily contact sports’ to avoid potential external dangers

I was an isolated kid, but I don’t mean to sound down about it all.

I turned out alright, but yeah, it sucked at the time.

This document provided general information and guidelines for managing me,

the child with ITP. It was intended for adults to have at least a vague sense

of what was Wrong™ with me and adjust their treatment accordingly.

As far as I recall, I never got a handout.

Or counselling, until I sought it out myself 15 years down the line.

It is my intention in this pamphlet to vulgarize and translate my experience of illness

in such a way to be informative and engaging.

I want to share what I’ve been through,

in the hope that my words will resonate with others.

I am not a doctor, I am a lifelong patient.

In attempting to explain the research I do, I may get things wrong.

I ask that you forgive such errors as you notice,

and engage in a dialogue with me.

Thanks to Maman’s recordkeeping, I have a filing cabinet

of my medical transcripts, letters, general information and the like

which covers most of my childhood post-diagnosis.

Auto-Immune Heresy, this pamphlet, is where I begin to disentangle it.

I am setting out on an archaeological dig

of the medical knowledge that was produced about me.

I began writing this in 2018 out of a need to share,

that these words may go out to all interested parties.

Blood is a tricky object, and I hope we may make sense of it together.

It is fundamental to our very lives, but too often ignored.

I will record my thoughts and feelings in an attempt to make sense of it all,

I invite you to join me on the journey, to keep us going.

AUTO-IMMUNE HERESY IS AVAILABLE NOW

I wrote out of a need to speak. To give voice to an experience that has been mine, and is infinitely larger than me. I am speaking about sickness. Long-lived, recurrent, and entangled with the entire 21st century into which I was born. 8 years of writing about 20 years of chronic illness. This book project is a means of re-narrativizing my life.

Purchase Auto-Immune Heresy