Believed to have cell syndrome that has led to lifetime of chronic illness
Elizabeth Oxford of Luling had hit rock bottom with her health issues, but after years of searching for answers, she and her family just might be on the verge of finding them.
The Oxfords are fresh off of a trip to Seattle where Elizabeth was able to find a doctor with some — rare, as it turns out — expertise in Mast Cell Activation Syndrome (MCAS), something Oxford has believed for awhile has been at the root of her longtime fight against a plethora of illnesses, which has gone on since she was very young. Furthermore, it’s believed her son, Aiden, may also have MCAS, a disease which Oxford notes was discovered just 10 years ago, meaning it’s a relative unknown when it comes to research within the medical community.
“I was a very sickly kid,” Oxford said. “Infections, allergy issues, earaches, migraines, joint pain, fatigue … there were so many things that weren’t the norm for an active 12 to 13 year old girl. I was always in and out of the doctor’s office.”
No matter how well she took care of herself , it was relentless. She had to miss approximately 25 to 30 days a year in high school, and accomplishing her goals in the face of so much fatigue left her completely drained.
At the age of 14, she was diagnosed by doctors, but said she’s since found it to be inaccurate.
“I think it’s clear they just needed to name something for my mom, who wasn’t going to give up until she got an answer,” Oxford said.
At the age of 22, her mother passed away, adding a heavy emotional toll to go with the physical price Oxford paid daily. But eventually, things seemingly began to improve physically. She didn’t have as many migraines and her fatigue had become manageable. She married her high school sweetheart and the two began a family, having two children.
But her health issues returned, worse than ever before.
“Suddenly, it wasn’t manageable at all,” she said. “I had to see a specialist for one thing or another all the time, like I’d won the darn chronic illness lottery.”
She soon recognized her young son Aiden as having many of the same issues she had growing up.
Oxford filed for disability five years ago after she had to leave her job due to her health decline. Essentially confined to her bed on her worst, her quality of life had deteriorated to the point where she admits she had thoughts of suicide.
But instead of allowing the pain to win, she used it to drive her.
“That was the point where I flat out decided we have up the ante on finding these answers,” Oxford said. “I had lost all hope and we needed something.”
She went to many doctors, none of whom could exactly pinpoint the root cause of the problem. But Oxford herself found perhaps something of a breakthrough when, while researching fibromyalgia, she read how it related to the mast cell — she recognized that from her experience with mast cell cytosis, which she had previously been diagnosed with as a child. That led her to learn about mast cell activation syndrome. Oxford was formally diagnosed with MCAS three months ago.
“It’s a big piece of the puzzle,” Oxford said.
Still, with very few practitioners having detailed knowledge of the newly discovered illness, her options to find a true solution were limited.
The family found their best option was to travel to Seattle to meet with MCAS specialists, though given the longtime financial drain of this health battle, it was something yielded from a desperate effort to find answers. It prompted the Oxfords to start a GoFundMe page to offset some of the costs of their attempts to find clarity.
Oxford believes there is — finally — a light at the end of the tunnel.
“We didn’t get the hard answers that were kind of the dream for us, but (the doctor) is doing it the right way,” Oxford said. “She can give us a direction, which is what we’ve needed for a long time.”
Oxford said the disease is incurable to this point, though she hopes that will change in the future for her son. For herself, she said the doctor was realistic, but provided the hope she’s badly needed that her life could yet get back on track.
“She told me, I’m not going to get you to being an Olympian or anything like that, but you can be functional again, and get back your quality of life. For the first time, I really believe it,” Oxford said.
Oxford also said she doesn’t believe she’s alone at all in this fight, and wants to spread awareness of MCAS and other diseases like it.
“It’s estimated that 17 percent of people have some kind of mast cell disease that cause these chronic illnesses, and the longer it goes untreated, the worse it becomes,” she said. “Those cases are harder to reverse, but I want to do anything I can to let people know.”