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Posted by on Jun 26, 2013 in Blog |

Does your GP/PCP Just Not Get It? The Thousand Faces Of Mastocytosis

Does your GP/PCP Just Not Get It? The Thousand Faces Of Mastocytosis

Do you want to share your thoughts about The Thousand Faces? Or let us know whether your doctor is more receptive after reading the article? Please head for the forum and let us know what's up.

Having That Feeling, Again?

Don't you feel embarrassed when YOU do know what's wrong with you, and when you go and see your GP/PCP to share your symptoms with him/her, your doctor looks at you and goes, like,

Yeah right …

Well, it seems this situation is a common challenge for mast cell disease sufferers. More so for females than for males, apparently.

Compassionate Mast Cell conditions experts from the University Of Toronto, who have come to deal with patient's misery day after day after day, consider this to be a real problem for patients. So much so that they have written an excellent paper to help redress the situation.

Enter the “Thousand Faces of Mastocytosis: Mistaken Medical Diagnoses, Patient Suffering & Gender Implications”, by Aysan Sev'er, University of Toronto, R. Gary Sibbald, University of Toronto & Women's College Hospital and Carrie D'Arville, Mastocytosis Society Canada. (Credit: University Of Toronto) (click on the name of the article to download it)

This is a must read, put-your-foot-down-and-force-your-doctor-to-read article. You should have it in your back pocket every time you visit your doctor. It is written BY doctors, FOR doctors.

When You Gotta, You Gotta

Believe me, download it and read it now. Although the paper contains several sorry accounts by patients, it will make you feel better as you'll realise that your doctor's attitude is not personally geared at you. Your doctor just applies the knowledge he/she acquired during his training.

I know, I know … you don't have the time to read a 29 page document …

Well, I've got news for you.

It’s YOUR Life

Unless you make the time to inform yourself about your own condition, no matter how much effort it takes, no-one else will.

Our GPs/PCPs have NOT had the benefit of studying mastocytosis. They don't even know it exists! They don't have the time to get to grips with it either.

Remember, mastocytosis is considered a RARE disease. Depending on which research you read, the mastocytosis prevalence ranges from 0.3 per 10,000 to 1 per 500,000! So, what's a busy GP to do, spend the time learning about one obscure condition which affects maybe 1 or 2 patients in their practice?

I think not. Do you?

So, sit down, download the thing and read. It's an easy read as well.

Will It Work?

Want to be sure this will help you convince your doctor? Here's the abstract of the paper:

The goals of this paper are to help a larger circle of medical professionals by creating greater awareness of Mastocytosis. Our focus is on the complexity and seriousness of the symptoms, and medical tests which are helpful in diagnosis. We include first hand experiences from 12 Mastocytosis patients who are long-term sufferers of this elusive but cruel malady. Finally, we will make recommendations to the medical community, as well as the Mastocytosis sufferers, about how to recognize and live with this disease. It is our sincere hope that our participants’ struggles and their experiences with Mastocytosis, as well as with their medical professionals, will improve the diagnostic process for Mastocytosis. It is also our sincere hope that the possible gender biases in dealing with female patients will be reduced or eradicated in the face of a plethora of Mastocytosis symptoms. It is not blame we seek, and we certainly do not wish to point fingers. Our aim is the creation of more accessible knowledge, faster diagnosis, mutual respect between patients and caregivers, and better ways of dealing with this frightening disorder.

Oh, and by-the-way, out of the 29 pages in the article, there are 10 pages of patient's testimonials and 2 and a half pages of references. And you've already read the one page abstract. So, only … hmmm … let's see … er … 15 1/2? Yeah, only 15 pages and a half to read, if you're strapped for time.

So, reading the stuff is not the end of the world. Get on with it. Print it, highlight the passages that you want your doctor to read, book a double appointment and ask him to read it.

Come on … You know you want to …

And please let us know how you got on with your doctor in the forum.  Any success?