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A Mother’s Road to Diagnosis
January 2022 I’m Sandra, and my story began 20 years ago. My first drive to the ER with my daughter was one of my most scariest moments. She was covered in hives and went into anaphylaxis. What was happening to my daughter? Did she eat something she was allergic to? Did she use a new […] Full story -
Dawnique’s Story
Hi, my name is Dawnique. I live in New Mexico. I have Mast Cell Activation Syndrome. It is thought that I’ve had it for years but I didn’t become very sick with it until December 2020. I was diagnosed with MCAS January 2021. My worst symptoms are: Anaphylaxis, dermatographia, swelling, hives, rashes, diarrhea, gi pain, […] Full story -
Sarah’s Journey to Diagnosis
In 2011 I was diagnosed with a Carcinoid Cancer Tumour in my appendix they call it Neuroendocrine Cancer now. In 2013 I developed symptoms of asthma, flushing, tachycardia and severe abdominal cramping, throat swelling these symptoms were very similar to Carcinoid Syndrome but once it was ruled out a doctor suspected Mastocytosis I then had […] Full story -
Cheyanne Perry
A woman stood amongst the rubble, solemnly watching as the emergency crew prepared her husband for transport. An officer contorted his face with a hardened expression, delivering the unfortunate news. It was assumed he fell asleep behind the wheel. The predicted outcome was grim. Despite numerous miscarriages, the young newlyweds were unknowingly parents the day […] Full story -
Joseph Lentz
Joseph has been his parents hero from the very beginning. He was diagnosed with Diffuse Cutaneous Mastocytosis by 6 months old at the University of Minnesota Masonic Hospital. Now at the age of 6, he is at risk for extreme anaphylaxis at any time. We are also being challenged with GI and fatigue problems. JoJo […] Full story -
Olive Clayson
A TMS Hero...
Can You Find Love and Friendship Online? Articles About Our Friend Olive… In the late 1990s, a diagnosis of mastocytosis left most with fear of the true unknown. My family, like many others, didn’t have a personal computer in our home. Computers were for work. I had been unable to work for some time, but […] Full story -
Princess Among Soldiers
Patient Heroes
Article By Pam Hodge I have cried a million tears and asked why a million times, never to get the answer. At times I have just held on because that is all I could do. I thought at times our family would crumble because of lack of support. I have gone through the stages of […] Full story -
Catherine Weiler MD PhD
TMS Hero
Dr. Catherine Weiler’s career has been dedicated to the treatment and study of allergy, immunology and mast cell disorders. She has been in the Division of Allergy at the Mayo Clinic in Rochester, MN since 1998, is currently the Co-Director of Mayo Program for Mast Cell and Eosinophilic Disorders and will be the incoming Chair […] Full story -
Wyatt the Warrior
Young Hero
As a mother, nothing can prepare you for moments of darkness. When you have a baby, you pray for all good things… all good moments. You expect light. One thing our youngest son Wyatt has taught us is that, despite all dark moments, light will always prevail. When Wyatt was born, I immediately knew something […] Full story -
Patricia Beggiato
Caregiver
Never in my wildest thoughts did I imagine my current role as care provider to my husband. For years leading up to 2010 our lives were pretty typical. Two daughters in school, a restaurant that we owned and managed and a family filled with love and joy. Leading up to that time, Fabio was extremely […] Full story
Get Involved
We are connected by love, desire, and our mission to find a cure for this disease. Our Community is what unites us and provides us the opportunity to embrace and support each other. Join Us.
TMS heroes
Our heroes come from all walks of life. They are caregivers, doctors, nurses, pediatricians, allergists, family members and of course our individuals suffering from mast cell disorders. The journey each one of us takes is unique and often difficult but in sharing, we all gain. If you are interested in sharing your story please email us at stories@tmsforacure.org
TMS Speaks
Insights from The Mastocytosis Society, members and greater community.
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In Memory of TMS Founding Member Rita Barlow
This week we lost a dear friend and advocate of the mast cell disease community, Rita Barlow. We are deeply saddened by this loss given her unwavering commitment to patients and TMS for many years. Rita served as TMS Chair from 2002-2009, Vice Chair 2009-2018 and as director emeritus after her retirement. Over the years, […] Full story -
TMS Mast Cell Activation Syndrome Initiatives Update
Good day, The Board and committee volunteers at TMS have been increasingly aware of frustrations arising in several areas, specifically with difficulty accessing care and for both recognition and validation of Mast Cell Activation Syndrome (MCAS). Please know that we share your concerns and these issues are foremost in our minds every day. We are […] Full story -
The Poet’s Corner
Welcome to The Poet’s Corner We would like to give members of our mast cell disorder community an opportunity to share their poems on this site. If you would like to submit a poem, please email it to secretary@tmsforacure.org. Ode to a Mast Cell Flare by Kathy Bell, 2016 My skin, it itches, my eyebrows, […] Full story -
Helpful hints for living with the symptoms of mast cell disorders
“Proper self-care is not a luxury. It is as necessary to my disease management as my meds.” Helpful hints for living with the symptoms of mast cell disorders shared by patients living with these disorders: Overall Stability Being Prepared Medical Alert Jewelry and Devices Eating at home and outside of the home Bone Pain Fatigue […] Full story
