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SUPPORTERS COMMUNITY PHYSICIANS & EMERGENCY PATIENTS & CAREGIVERS MASTOCYTOSIS ABOUT US
Physicians and Emergency Medical Tests Treatments Emergency Surgery and Anesthesia Physician Literature Related Conditions Frequently Asked Questions
Q. Is there a dominant type of patient with mastocytosis, MCAS or IA?
A. No. There has been interest noted by some physicians that adult patients seem to be typically Type A or highly specialized or accomplished in some way professionally. But this hasn't been formally studied or proven in any way. And it would not explain babies or children who are born with these disorders. It's just been an unusual commonality noted by some physicians in adult patients.

Q. Is there any family medical history which might support a patient developing or having these disorders?
A. Very commonly within a family there is a history of immune system and/or inflammation (eg. arthritis) disorders reported by patients.

Q. Are the diagnostic tests easily performed and available nationwide in Canada?
A. Unfortunately not all of them. There are a couple of tests which some hospitals in Canada will perform while other hospitals will not. Frequently, the independent labs don't know the tests which have been ordered and the patient or physician has to provide detailed testing protocols or explain the test required, how it's done, specific staining or preservative applied to samples needed.

There are a couple of tests which are not performed in Canada anywhere which are very helpful tests. These are the 24 Hour N-Methylhistamine Urine Test and the Prostaglandin D2 test. Some physicians connected to hospitals in Canada are able to ship the samples to the USA (Harvard, Stanford, or the Mayo for example) for testing. But it depends if the hospital allows for these arrangements and if they will cover the costs in their budget. For patients, if their specialist is not connected to a hospital, they tend not to receive these tests which is very unfortunate.

Q. I only have one or two patients with these disorders and have never seen this before. Is MSC able to help me as a physician in any way?
A. Yes! Our website is a lot to read and process and we recognize most physicians may not have time to read it. If you need some fast answers, direction, seeking colleagues to consult who are willing to communicate with you on your patients' case, we can help arrange and provide possible answers and support. If you need something researched and don't have time, contact us for that as well. Our library of medical research articles is sectioned by organs and systems of the human body. We've been collecting articles for 10 years. If we don't already have something to help you, we'll search to find it. If it's out there, we can track it down and email or phone you based on your preference.

Q. As a medical professional, I'm hesitant to give out my name or direct private contact details (email address, cell phone number). If I contact you, will my private contact details be kept confidential?
A. Yes, most definitely. We've been fortunate to have physicians (nearly 100 now) throughout Canada share their private contact details with us. We act as a confidential intermediary for physicians and never divulge private contact details of physicians except where permission is expressly stated. Your contact details are only shared with other physicians in ongoing situations we're helping you resolve or address.

Q. Are there any plans or intentions to host a medical conference for physicians in Canada to specifically address these mast cell disorders?
A. Yes, we've had that plan for years. The only thing getting in our way is money. We're hoping to host webinars beginning in 2013 for both physicians and patient conferences if possible. If you are interested in participating, please contact us. In future years, we hope to have annual conferences in person bringing physicians and patients together for learning, discussions and lectures. We want to help physicians connect with each other and bring in more experienced medical featured speakers from other countries as well. All areas of specialty medicine need to be involved to promote education and learning amongst the medical community in Canada.

Q. Why have I never heard of these disorders before?
A. It's not your fault. Internationally, these disorders were considered so rare, it was thought nobody would encounter a patient like this, so they were not taught about 'mastocytosis' in medical schools. That's one explanation we've been given consistently by many physicians all over the world. We hope to help change that in Canada.

Q. I have a patient presenting with these symptoms but it's really not something I'm comfortable trying to address. What do you suggest?
A. First, find a way to communicate that to your patient honestly but compassionately. We do understand and prefer when doctors say "I don't know". Most physicians have not heard of this or if they have now heard of it in recent years, they don't know how to approach it. Nor does their case load allow them to delve into it for various reasons. Feel free to contact us or suggest the patient contact us. We've been building a list of physicians experienced with these disorders in every province of Canada and worldwide. We will help you find someone to refer them to or we will help the patient do that.

Q. If I prefer to communicate with a fellow physician rather than your organization, is that possible for you to facilitate?
A. Yes, absolutely. Please contact us and we will connect you with other physicians in Canada who are experienced with your specific needs if we know of someone. If we only have general expertise to recommend, we will explain that and still connect you. We act as facilitators but never want to hinder the process of physicians helping patients however they deem is best.

If you are a medical professional and have a general question not answered here, please contact us at your convenience. We will respond within 24 hours. Usually we respond immediately barring extenuating circumstances.
Contact us: info@mastocytosis.ca.


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