From the TMS Board > Board News > 2005 Board News > TMS Considers Expanding Society's Name

TMS Considers Expanding Society's Name

August 1, 2005

The Board of Directors of the Mastocytosis Society would like to announce that we have been considering a name change for the society to be more representative of its members, and its potential members, and we are asking you, the members of TMS, for your input on this critical issue. We would like your input on the proposed name change, after considering the following factors:

1. Twenty years ago, nearly all patients with symptoms of systemic mast cell disease were given a diagnosis of mastocytosis, as that was the only official name for such a histamine releasing disorder. Over the years, many physicians, including those at Vanderbuilt and at Brigham and Women's Hospital, began to divide the systemic mast cell diseases into sub-categories, including mastocytosis and mast cell activation disorder, and many of those patients previously diagnosed with mastocytosis were given an alternate diagnosis. In 2000, specific criteria were established for the diagnosis of mastocytosis, and many physicians began to reclassify their patients based on that new criteria. There is some question that the criteria may not be inclusive enough, and currently, Dr. Castells and other mast cell researchers are pushing to establish new, more inclusive criteria. In the meantime, many patients who previously thought they had the mastocytosis form of systemic mast cell disease now find they may have another form, currently referred to in some of the literature here, and abroad, as mast cell activation disorder.



2. Informal surveys of patients seeking treatment at two mast cell disease treatment centers, University of Michigan with Dr. Cem Akin, and Brigham and Women's Hospital, with Dr. Castells, yield the result that 40-60% of patients seeking treatment for mastocytosis have, in fact, some other disorder of mast cell activation.



3. The American Academy of Asthma, Allergy, and Immunology, an organization that has many of our physicians as members, has established a Task Force on Mast Cell Disorders, which include systemic mastocytosis, mast cell activation disorder, idiopathic anaphylaxis, urticaria pigmentosa and other cutaneous forms of the disease, and more aggressive and/or malignant forms of mast cell disease, including mast cell leukemia. Dr. Castells initiated discussions about getting the Task Force established, and our research committee, specifically GigiPark, did a lot of preparatory work to help with that initiative. This task force is an enormous undertaking, which potentially can make a critical difference in how we are all diagnosed and treated, whether we have mastocytosis or some other form of mast cell disease. Changing our name would indicate that we, too, are committed to both mastocytosis and other forms of mast cell disorders, now that they are in the process of being differentiated.



4. It is important to the Board that access to TMS is readily available to all patients with the above named mast cell disorders. We are discussing an expanded name, "The Mastocytosis and Mast Cell Disorder Society", retaining the initials TMS, with the "M" representing both mastocytosis and other mast cell disorders, including, but not limited to, mast cell activation disorder, This name would more accurately represent the membership that we currently serve and are committed to, as well as make us more accessible, via internet search engines and literature searches, to all patients with mast cell disorders.



5. The name change would also give us increased visibility in the medical community and within the Task Force on Mast Cell Disorders, potentially causing more physicians and medical personnel to learn more about our diseases.



6. Last, but certainly not least, changing the name would potentially increase membership. While we currently have a significant portion of our membership with a diagnosis other than mastocytosis, we have also had some patients who had an initial diagnosis of mastocytosis, then subsequently had a negative bone marrow biopsy, and who promptly left the organization. This would make those members feel welcome, as well as attract new members with mast cell disease diagnoses other than mastocytosis. Again, we would always be equally committed to all mast cell disorders, including mastocytosis, so no one would be left out or adrift.

We know that TMS would not be here today without the support of its members and founders, and we are very appreciative of your careful consideration of all the above factors. We look forward to hearing your input on the proposed name change. You may email or mail your opinions about the name change to Rita Barlow and/or Valerie Slee, and the contact information is below.

Thank you for your time and commitment to TMS!

TMS Board of Directors:

Rita Barlow, Chair
jbar5@verizon.net
P.O. Box 284
Russell, MA 01071

Valerie Slee, Vice-chair
vmslee@aol.com
23 Camelot Drive
Shrewsbury, MA 01545

Regina Rentz, Treasurer
Susan Manchester, Corresponding Secretary
Michael Zorska, Recording Secretary
Leonard Levenda, Special Projects
Wanda Hermann, Chronicles Editor
Cindra Carey, Support Group Chair

Committee Chairs:

Regis (Gigi) Park, Research Chair
Emily Menard, Fundraising Chair