WSVN — A local woman who suffers from a painful condition lost hope when her medication stopped working, but a drug not available in the U.S. offered help. 7’s Alexis Rivera shows us how doctors are using scientific studies to save lives.
Living in color has always been Dawn’s dream.
Dawn Verheylewegen: “It was my goal from very early on. I always wanted to be an artist.”
But her career was almost sidelined because of a rare disease.
Dawn Verheylewegen: “I developed this very rare disease called Systemic Mastocytosis.”
Systemic Mastocytosis is a disorder of the mast cells. If the body produces too many, they wreak havoc and can even cause cancer.
Dawn Verheylewegen: “It’s one of those diseases that for every person who has it, their symptoms are different.”
For Dawn, it started when she got an epidural during the birth of her son.
Dawn Verheylewegen: “I was completely numb on one side. I had these massive hives all over, all over.”
And even worse, the rash never goes away. But the symptoms went from irritating to debilitating.
Dawn Verheylewegen: “You would get these ice pick headaches and the dizziness, all of these things, bone pain.”
Medication was the only way Dawn could control the symptoms enough to even get through daily tasks. After 10 years, the meds stopped working.
Dawn Verheylewegen: “It became very frightening, very fast because it seemed like my bone marrow just went into a dive.”
She could barely function and doctors gave her the horrifying news that chemo was her only option to get her life back.
Dawn Verheylewegen: “There really weren’t any happy options.”
Then her doctor found an experimental drug from France but it wasn’t available here.
Dawn Verheylewegen: “The drug was not commercially available here in the United States and not been FDA approved.”
So they turned to the Office of Human Research at Memorial Healthcare System for help.
Dawn Verheylewegen: “He referenced this article and said can you get a hold of this drug for me from the pharmaceutical company?”
Dr. Candice Sareli contacted the drug company in France, described Dawn’s case, and got permission for something called ‘Compassionate Use’ research.
Dr. Candice Sareli: “A special research study that is opened specifically to a patient with a disease.”
Now Dawn gets the medication and monitors her progress.
Dr. Candice Sareli: “Within six weeks, the patient was on it and she reacted fantastically to the drug.”
Dawn has been on the experimental drug for a year.
Dawn Verheylewegen: “All my blood counts have come back to normal.”
She can’t believe how much her life has improved and while Dawn knows there are risks involved, she is thankful for a second chance.
Dawn Verheylewegen: “I have a husband and I have a child and I have a family that I love. So why wouldn’t you?”
There are currently 120 open studies available for patients.
For More Information: