SYSTEMIC MASTOCYTOSIS DOCTOR DISCUSSION GUIDE

WITH SO MANY QUESTIONS, IT’S HARD TO KNOW WHERE TO START.

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DOCTOR DISCUSSION GUIDE

It is important to talk to your doctor about symptoms you are experiencing. Use this guide to help prepare for your next visit with your doctor.

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Topics for Discussion

Below are a few of the topics you may want to cover at your next appointment. Remember, your doctor is always the best source for information and questions about systemic mastocytosis (SM) or your health.


Symptoms

Discuss any new symptoms since your last appointment, those that are of concern, or any that you are continuing to experience.


Triggers

If you’ve noticed anything in particular that may be causing your symptoms, bring it up to your doctor. Keeping a journal about your symptoms, foods, and activities is a great way to identify triggers.


Medications

Be sure to tell your doctor about all medications, supplements, or vitamins you’re taking.


Medical History

Request your full medical history or keep a list handy of all the conditions a doctor has diagnosed you with or has suspected. It is important to review your medical history with your doctor. It may help connect the dots.


EVALUATING FOR SM

Start by talking to your doctor and sharing your full medical history. There are several tests that your doctor may use to evaluate for SM. Some examples are included below. If your doctor isn’t familiar with the disease, you might be referred to a specialist, such as an allergist/immunologist or hematologist/oncologist.

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Tryptase Test

This test measures the amount of tryptase (an enzyme that is released by mast cells) in the blood. For more accurate results, a doctor may ask for a tryptase test after you have an allergic reaction.

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Biopsies

Biopsies are tissue samples taken for closer examination. Skin, organ, and/or bone marrow biopsies are used to measure the number of mast cells within tissue and to detect abnormalities.

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KIT D816V Testing

A KIT D816V blood test can help aid in the diagnosis of SM by identifying a genetic mutation that has been found in approximately 95% of patients with SM.

While one test alone cannot confirm an SM diagnosis, it may help your doctor determine what additional diagnostic testing is needed.

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Start the Conversation

To help prepare for a conversation with your doctor about the symptoms you are experiencing, download the doctor discussion guide.

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KEEP READING

Learning more can help you along your journey. Here are more topics that may help.

About Systemic Mastocytosis Icon
ABOUT SM
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Systemic Mastocytosis Diagnosis Icon
DIAGNOSIS
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LIVING WITH SM
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