DICKINSON N.D. — Nothing is more frustrating and heartbreaking than being unable to help someone who is in great pain, especially when that person is a loved one.
For Virginia Alexander, that person is her daughter, Jenna Alexander-Montgomery.
Jenna, 28, suffers from myalgic encephalomyelitis, a more severe version of chronic fatigue syndrome.
Alexander works now to create greater awareness of the disease and her daughter's difficulty in getting the treatment she needs.
"People just don't get it," she said. "If you throw the word 'cancer' out there, people would get it, but because it's not cancer and it's something nobody's familiar with, we just don't get the response to the fundraisers we've tried to do to help her financially through what's she going through."
Alexander was born and raised in Dickinson, and moved back to the city in 2010 to help take care of her aging parents.
Jenna joined her to attend Dickinson State University.
"She was pursuing an arts degree in education," she said. "She was so excited. She wanted to teach children, but that's when some of her health issues started to come to the forefront."
Even as she earned her degree, Jenna struggled with the symptoms of M.E. Those symptoms soon worsened, and Jenna began to develop other conditions.
"She ended up having to go to California to be diagnosed," Alexander said. "She was told to go gluten free, so she had, in college, and she inadvertantly ate gluten at a wedding and went into anaphylaxis, and that triggered something else, called mass cell activation syndrome."
Jenna developed cranial cervical instability, meaning her brain stem is being pushed into her spine, worsening her conditions.
"It's almost like an avalanche, is the only way I can describe it," Alexander said tearfully. "It's just continued to snowball."
Finding care providers locally who even understand Jenna's condition, let alone facilities able to treat her condition, has been impossible.
"The lack of understanding also led to part of the problem," Alexander said. "In the clinics here, when she was having 50 or 60 seizures a day, they tried to tell us she basically needed to see a shrink."
Jenna was just dropped by her local care provider, Alexander said, for being "too complex of a case."
Alexander and her family have begun raising funds for Jenna's needed spinal surgery, which can only be done by a specialized neurosurgeon.
Only three exist in the country.
"Without her having this surgery, she's going to suffer for what's left of her life," Alexander said. "They say it won't fix everything, but if you have a shot at some quality of life, everybody deserves that."
Speaking for herself is difficult for Jenna, Alexander explained. Because of a condition called autonomic dysfunction, her resting heart rate is much higher, as if she had been exercising for several hours.
"She burns out her energy really quickly and gets overwhelmed, and the words don't come out right when she's out of steam," she said.
Alexander helps people to understand that mass cell activation syndrome might be at the core of many autoimmune diseases, according to new research.
"If we can bring awareness to some of these illnesses, it might help when we go to ERs and doctors," she said. "They said in high school (Jenna) had panic attacks. We're aware now that she was allergic to scents. She was going into a type of anaphylaxis."
She added, "It's been a hideous road that this young woman's been on."
To help create more awareness of M.E., Jenna has created a facebook account about her life and even spoken with national legislators about the illness.
Alexander continues to be inspired by her daughter's challenges, despite the many hardships they have endured.
"If there's a charitable event, I donate and donate, because I always thought you have to put good karma out there," she said. "Now, I've been able to help other people, and I'm not able to help my own, and that's heartbreaking."
For more information on myalgic encephalomyelitis, visit www.facebook.com/MEwarriorgirl.