Xander 2014

If you have recently discovered you have Hereditary Alpha Tryptasemia Syndrome, you're not alone. We're gradually adding faces and stories.

 

received 340987484000525🆕 Alisha & Nova Steele - a mother and daughter, who are also Patrick Steele's sister and niece.

Alisha & Nova

 

Ashley - see this article, about a Canadian woman who shared her Hereditary Alpha Tryptasemia story on Rare Disease Day 2021.

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🆕Candance Mahlendorf - Candance Mahlendorf, caregiver for her adult son with HaTs. ☝️

"The last 20+ years have been spent trying to unravel the mystery of my son's physical and mental health symptoms. The diagnosis of HaTs finally started putting the pieces of the puzzle together for us. Mental health symptoms have a way of masking chronic physical symptoms and making them take a backseat to the mental health symptoms. Many people with complex illnesses end up being referred to psychiatrists in lieu of medical care but when you combine actual mental health symptoms in combination with a complex illness it takes a complex situation to new heights. Far too many patients with these illnesses experience gaslighting and suffer needlessly. Many people with HaTs experience a variety mental health symptoms and may be experiencing a organic brain syndrome as opposed to a major mental health diagnosis. Treating the underlying illness can help resolve the mental health symptoms. My goal has been to try to bring awareness of this aspect of HaTs,  mast cell illnesses and their co-conditions via education and awareness. I started a public group on faceboook as a place to warehouse peer-reviewed research so I had easy access to the articles in one place. It has now grown to over 2000 members which include many health care providers, researchers, mental health providers and therapists from around the globe." 

 

🆕 Cynthia Knight - picture coming soon. Cynthia, who lives in New Zealand, started the Hereditary Alpha Tryptasemia, Hypertryptasemia and Comorbidities group on Facebook.

 

received 282098213273476🆕 Kathi Jo - we met online, but it was so exciting to meet her and her siblings in person at the TMS Conference in 2019.

 

 

 

 

 

Nicole Campbell - see this article, about a woman who has a mission. Photo Courtesy Chris Clark, Spectrum Health Beat. 

🆕 04/01/2021 - Happy 3rd legaversary, Nicole! 🎉

For more updated information, see her public Facebook group, My Zebra Journey. ⤵️

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Jan Hempstead - see this article from The Mast Cell Society's website. Jan (left) and Karen (right) met at The Mastocytosis Society's conference in San Mateo, CA in 2019.

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FB IMG 1616716784600🆕 Logan Rigsby - Logan hopes to tell her story about her diagnosis sometime in the future. it includes a lifetime of asthma and allergies, as as well as a recent history of rashes. She works at Virginia Commonwealth University; ironically, at times she has worked on the same floor as Dr. Lawrence "Larry" Schwartz, do they have never met each other.

🆕 Megan Stansfield - 

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Patrick Steele - See this article from his Facebook page. It is a Public article, but requires access to Facebook.

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🆕Sarah C. Glover, DO, and Ken Wilson - Sarah (R) has the unique distinction of being both a HAT patient and a Gastroenterologist at the University of Mississippi. On the HATS Bookshelf contains articles that she has co-written. Her husband, Ken (L), has HAT as well.

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🆕Ella Wilson, Sarah & Ken's beautiful daughter⤵️ naturally has HAT, because HAT is autosomal dominant and both of her parents have HAT.

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Xander Will, Karen Smith-Will, Kasi Grosvenor, Ella Grosvenor

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Karen and Kasi are sisters. See the links below, which were videotaped at The Mastocytosis Society annual convention, in San Mateo, California, May 1st through 3rd, 2019.

 YouTube KSW

 

In Memoriam

🕯️Laine Plotkin Viilo, 10/24/18 - Laine, self-proclaimed "Coxwain for the Lemon Patch rowing club," was a friend I only knew online. But at that time, I had never met anyone in person who had HATS, making relationships like hers special. Besides her quirky sense of humor, Laine was lightning-quick to share peer-reviewed research amongst the HATS community. Her BSN and vast hospital experience gave her invaluable insight that enabled her to help her own boys and others with mast cell-related disorders. Her obituary:

Laine Natalie Viilo Plotkin, age 37, of Concord, NC, passed away on Wednesday, October 24, 2018. Laine was the wife of Marc F. Plotkin and mother to Ethan Joseph and Aiden William, all at home.

She was born on August 18, 1981, to the late Joseph Walter Viilo who died in 2003 and to Susan Lynn Hartfelder Viilo Gable of Drummond Island, MI. Laine was raised on Drummond Island, Michigan and went to school at University of Michigan-Flint. She graduated with a Bachelor’s of Science in Nursing and went on to work in various hospital specialties.

Laine married Marc Franklin Plotkin on August 12, 2006, and was a wonderful wife and devoted momma to Ethan and Aiden. She was always creating family moments for them when they put puzzles together, played games, planting flowers and sharing ice cream. These special moments will continue to live on as happy and precious memories for the future.

Laine loved to care for people which drove her to become a Registered Nurse. In recent years Laine devoted herself to educating families with rare diseases and helping other parents find care and help for their children.

In addition to her husband, sons and mother, Laine is survived by her step father, Meade Gable of Drummond Island, MI, her father and mother-in-law, Charles and Sydnie Plotkin of Concord, NC, her sister, Lyndsay Douglass and her husband, Ryan of Traverse City, MI and brother, Shane Viilo of Iowa City, IA. Laine also leaves behind friends and all will miss her very much. Memorials may be made to The Children’s Hospital of Philadelphia (CHOP).

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