Welcome to the website of
The Mastocystosis Society, Inc.
As the Mastocytosis Society continues our efforts to accomplish our mission of research, education, and advocacy for our patients, their families, caregivers and physicians, we’ve rebuilt our site to make it much easier to find and share important resources related to our cause. As part of our commitment to keeping important information about our organization easily accessible, we have created a more navigable website with additional resources, better tools, and a new visual design to give our visitors a better overall experience. ...Continue reading our welcome message
So... What are Mast Cell Diseases???
Mast cell diseases include mastocytosis, where the body produces too many mast cells, and mast cell activation syndrome (MCAS), where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headache, bone pain and skeletal lesions, and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odors, medications, insect stings, and foods. These symptoms are treated with medications including antihistamines, mast cell stabilizers, and leukotriene inhibitors, while anaphylaxis is a medical emergency requiring epinephrine. Mastocytosis can affect skin and internal organs such as the bone marrow, gastrointestinal tract, liver, and spleen. Most patients with mastocytosis have cutaneous (skin) or indolent (benign) systemic forms, but aggressive disease can occur, which may require chemotherapy.
A diagnosis of mastocytosis is confirmed by a bone marrow or skin biopsy. MCAS patients do not fulfill all criteria for mastocytosis but exhibit symptoms, may or may not have increased measurable mast cell mediators (commonly tryptase, histamine or its metabolites) during or shortly after an attack and do respond to the same medications that patients with mastocytosis do.
For more detailed information on Mastocytosis and Mast Cell Diseases please refer to our Research Page (Coming Soon!!!)
15-SEP-2014 - Survey
Submitted By: TMS Webmaster | 15-SEP-2014 | Take me back to the top
Hello everyone-Remember when we posted this in early August? We still do not have enough study participants! However, Adelphi is coming to the TMS Conference to make it easy for you to participate if you are intererested.
An interviewer will be available at the 2014 Mastocytosis Society Annual Conference in Rochester, Minnesota on September 18th and 19th. If you would like to participate in an interview during the conference, please be sure to bring with you some type of written documentation of your SM subtype diagnosis, either:
A bone marrow biopsy report indicating your SM subtype; or
A note from your doctor indicating your SM subtype and stating that it was confirmed through bone marrow biopsy.
Interview times will be scheduled at your convenience. You must have proof of your diagnosis with you in order to participate! This is your chance to partiipate in a research initiative!
Valerie M. Slee, RN, BSN and the TMS Research Committee
Have you been diagnosed with Systemic Mastocytosis?
A research study is underway to gather information about the symptoms people experience with Systemic Mastocytosis (SM).
We are looking for people with the following conditions to participate in a 60 minute interview:
- Aggressive SM
- Indolent SM
- Smoldering SM
- Mast cell leukemia
- SM with associated clonal hematologic non-mast cell lineage disease (SM AHNMD)
You will receive $100 for your participation.
The information you share will help educate the global healthcare community about SM from the patient’s perspective and inform the development of new SM treatments.
For more information or if you wish to participate, please email Roger Lamoureux (Research Assistant, Adelphi Values) at Roger.Lamoureux@adelphivalues.com and provide your name and preferred contact telephone number. Adelphi Values will then call you to arrange the next steps for you taking part in the interviews or provide you with more information.
Alternatively, please contact us at +1 617-720-0001 or +1 877-202-4215 (toll-free) and leave a message stating your name and telephone number, and a member of the Adelphi Values team will call you back.
15-SEP-2014 - ARTrust TMS Award
ARTrust TMS Award
Submitted By: TMS Webmaster | 15-SEP-2014 | Take me back to the top
2-JUN-2014 - Karate Fundraiser
Submitted By: TMS Webmaster | 2-JUN-2014 | Take me back to the top
19-MAY-2014 - Ketotifen Survey
Submitted By: TMS Webmaster | 19-MAY-2014 | Take me back to the top
Your input is crucial in our quest to bring Ketotifen (Zaditen – brand name) into the US market! We have a few of our physicians meeting with a representative of a pharmaceutical company who is interested in bringing ketotifen to the US. The meeting is this Wednesday, May 21, and has just been arranged last minute. To that end, we need some input for the discussion. Please answer the following questions.
Please respond to the following questions by Tuesday, May 20th:
1. Are you currently taking Ketotifen (or Zaditen – brand name)?
2. If yes, how are you currently ordering/receiving your prescription?
a. Through Personal Importation (following FDA protocol)
b. Through Compounding Pharmacies (within the US)
c. Other (please explain)
3. What is the cost of the medication?
a. Cost (of monthly or three month supply)
b. Is the cost covered by your insurance company?
4. Dosage for the day
5. Are you answering this mini survey from Facebook?
All personal information will remain anonymous. Results/data will be shared during discussions with potential pharmaceutical companies that are showing interest in trying to bring the product to US market. We need to stand up together and be counted…these pharmaceutical companies need to see the number of people affected by Mast Cell Disorders that are being helped by a prescription medication that is not yet available in the US!
Please send all responses to firstname.lastname@example.org (with the subject: Ketotifen Questionnaire) by Tuesday, May 20th.
Thank you in advance.
25-FEB-2014 - TMS Membership Drive
TMS Membership Drive
Submitted By: TMS Webmaster | 25-FEB-2014 | Take me back to the top
In honor of Rare Disease Day February 28, 2014 and
The 20th Anniversary of The Mastocytosis Society, Inc.
We are sponsoring a Membership Drive with a great offer:
A full year TMS Membership, normally $35.00, now reduced to $20.00 until 4/30/2014!
You can take advantage of this offer in one of several ways:
- Obtain a first time, brand new membership for this price!
- Renew your membership, regardless of when you last paid, and your membership will be extended one year from its current expiration date!
- Give a gift membership to a friend, family member or physician!
- If you are an Angel Fund recipient, you may extend your membership for another year for this price!
Benefits of membership include a vote in Society elections, a quarterly newsletter, The Mastocytosis Chronicles, as well as a personal copy of the Special Edition of The Mastocytosis Chronicles for Healthcare Professionals, discounts on annual meeting fees, including our exciting 20th Anniversary Celebration at the Mayo Clinic September 17-20, 2014, access to patient care coordination which includes help reviewing your symptoms and helping to manage your referral to an appropriate mast cell treatment center if indicated, and more benefits for members only are being planned! In addition, the more members we have, the more powerful we are as an organization effecting change on behalf of all patients with mast cell disorders! So, do your part to honor Rare Disease Day and join TMS!
Every member or potential member can benefit by taking advantage of this Membership drive! How?
- Go to www.tmsforacure.org and click on the Join button on the home page!
- Or, if you prefer to send a check by US Mail, or international mail, please make out the check to The Mastocytosis Society, Inc. for $20.00 and Mail to:
The Mastocytosis Society, Inc.
P.O. Box 129
Hastings, NE 68902-0129.
We can make an enormous difference if we can raise our membership numbers, which are almost at 600 for the first time ever, to 1000 or greater! Let’s do it! Send in your $20.00 now!
22-DEC-2013 - Boston Center of Excellence for Mastocytosis
Boston Center of Excellence for Mastocytosis
Submitted By: TMS Webmaster | 22-DEC-2013 | Take me back to the top
Season’s Greetings from all of us at TMS!
We have been contacted by Dr. Mariana Castells and the staff at the Boston Center of Excellence for Mastocytosis. It appears that there has been inappropriate use of their emergency paging system by some members of TMS. If you need to make an appointment, please call the clinic at 617-732-9850. If you are considering whether or not you should be seen at the Center and would like some help clarifying that from TMS, first become a member ($35.00 per year and free with an angel fund membership for those with financial difficulties), and then contact Valerie Slee, RN, BSN or Mishele Cunningham, RN, BSN at email@example.com. Care coordination services will only be available for TMs members starting January 1, 2014, but there is no impediment to anyone becoming a member. You can become a member by going to our web site www.tmsforacure.org or by sending a check made out to Jim McKee, Treasurer, The Mastocytosis Society, PO Box 129, Hastings, NE 68902-0129.
The Boston Center of Excellence Physicians are restricted by HIPPA laws about how they can function. The physicians cannot speak to any patient who is not registered at Brigham and Women’s and whom they have not seen yet, therefore, it is not possible to call and speak to Dr. Castells and Dr. Akin or any other Brigham physician in advance of a first appointment. Once you have seen them and become their patients, then you may contact them. In an emergency after hours, your physician can call the hospital and page the allergy fellow on-call for a professional physician to physician consultation on how to treat you, but no one can legally directly page Dr. Castells, Dr. Akin, etc. unless you have been instructed to do so by them after having seen them as patients.
Our relationships with these physicians are very important to the care we receive now and in the future. Dr. Castells was very gracious in her request. Please let us all comply with the same grace. Thank you. Val
Valerie M, Slee, RN, BSN, Chair
Patient Referral Coordinator
Liaison, Medical Advisory Board
Board of Directors
The Mastocytosis Society, Inc.