Nonprofit Raising Awareness of Rare Cannibis-Related Condition
PITTSFIELD, Mass. — The Stephanie Rose CHS Foundation is raising awareness of a rarely known condition.
Cannabinoid hyperemesis syndrome is an often misdiagnosed condition in someone who may use cannabis consistently over a long period of time. According to the Cleveland Clinic, up to 33 percent of frequent cannabis users seeking emergency room care displayed its symptoms of nausea, intense abdominal pain and vomiting. This can cause dehydration, loss of appetite, electrolyte imbalance and kidney failure.
Cannabis is often used to reduce pain and nausea and promote the appetite, especially with those undergoing chemotherapy. CHS does the opposite.
The syndrome was first reported in 2004 but has more frequently been diagnosed with the legalization of marijuana. The first deaths from conditions related to CHS were reported in 2016.
The Stephanie Rose CHS Foundation was started in June in memory of Pittsfield native Stephanie Rose Whipple, who was diagnosed with CHS and passed away from cardiac arrythmia last year at age 28.
"Most people with this condition, they don't even realize that they have it. There's not a lot of information or an awareness. So our loved one, Stephanie, she suffered with this for years, and she was diagnosed once by a doctor," said the foundation's treasurer and Whipple's aunt, Brittany Garcia.
Garcia and Alyssa Farella, Whipple's older sister and foundation president, said the family had not known about the syndrome, explaining there's not a lot of information about CHS.
"I just want people to know the risk factors, and I want Stephanie's death to have meaning where she loved helping people," Farella said. "She worked with the elderly, she did activities in a nursing home with elderly, and everything, she was very dedicated to helping people. So I feel like this continues her legacy of doing that to help."
The two want it to be known that they are not telling people to stop using cannabis, which doctors say is the only option now, but to simply inform them of the risks and to be a support for those who may have been touched by the syndrome.
"We're not trying to knock it. We're just showing that someone that we cared about passed away very young because of this. And if we can help anyone else and be there to support ... that's our mission," Garcia said.
The nonprofit is raising funds to invest into CHS education and research and to, hopefully, find a cure.
"Our donations are going towards research. I've looked into the Mayo Clinic. They do a lot of test studies on people that are experiencing CHS, and they have age ranges from like 18 all the way to people in their 70s, elderly people dealing with the effects. So a portion of the donations are going to research to find out find a cure for this," Farella said.
The foundation is holding its first event on Oct. 19 at Greenridge Park in Dalton from 1 to 4 p.m. People will be able to carve pumpkins, enjoy raffles, and more to celebrate Whipple.
"October is a very special month. Stephanie would turn 30 on Oct. 1. She loved all fall things. So this is a good time of year to really honor her," Garcia said. "She loved pumpkins, she went pumpkin picking with us and our little ones and she just loved all fall things. So we really want to do something that represents her birthday."
The foundation hopes to share Whipple's story with the local community and around the world.
"I want to reach other people. I want people that live in another state, that have lost someone. I want them to see this article and to see this and go, 'Oh my gosh, like I know someone that struggles with that,' read Stephanie's story, be inspired and to pass it along to another grieving mother or sister or aunt. I want to reach out not just our small circle, but I want other people to see this and go, 'Oh my gosh, this is real,'" Garcia said.
The family also wants to make sure Whipple is never forgotten.
"We want to put our grieving into something good, something that'll keep her name alive, because that's something we've always worried about, too, is she'll be forgotten," Farella said. "This is a way that she won't be and it's a way that we can take her sickness that she had and help others do good out of it."
Tags: cannabis, fundraiser,
