Dawn Louden of Conway said she is sure of two things: that she has multiple sclerosis, and that a stem-cell transplant is the right treatment for her.
“I know, I know that I know that God ordained it,” she said, sitting in the living room of her home.
The married mother of five said she is headed to either Chicago or Russia for the treatment, a procedure that will use her stem cells to stop the progression of the disease.
Louden said she has talked to people who have had remarkable results with the procedure.
It’s expensive, however, and that’s why she’s reaching out.
“I know it’s something we can’t do on our own,” she said.
A garage-sale fundraiser is planned for 8 a.m. to 4 p.m. May 3 at 11 Lancaster Lane in Conway, and donations are being accepted for the sale. Monetary donations can be sent to Vilonia First Baptist Church, where Louden worked until her MS forced her to resign.
“I have an amazing community and church family and friends,” she said.
Louden found out last week that she will go to Chicago on July 8 and 9 for an evaluation.
She will undergo testing, and the doctors on the team will confer “and see if I am a good candidate for their program,” she said.
If not, she’ll travel to Russia in May 2015 for the procedure.
The 40-year-old’s journey to a diagnosis, and then to the best treatment, has taken years.
She said doctors told her “it was all in my head, or that it was stress.”
Her mother, who died in 1995, also had multiple sclerosis.
“At the time, I had tingling in my face and a little bit of numbness in my leg, and the thought crossed my mind, but I went on with life,” she said.
Louden, who grew up in Ohio, said her mother was a strong woman.
“For a number of years, she was told it was all in her head. She finally took herself to the Mayo Clinic. Within three to four years of being diagnosed, she was unable to walk, unable to hold babies, unable to do much of anything,” Louden said.
“We’ve made a lot of progress since then,” she said.
Louden had a “ministroke” in 2003, and for a month, she said, “I couldn’t walk right. I couldn’t think right.”
“I just knew” that it was MS, she said.
She was finally diagnosed with the disease in 2005.
“I had an MRI and a spinal tap,” she said. She also had a nerve-conduction test. “They basically send electrical currents through different parts of your body to see if the nerves are shooting right.
“It was absolutely a relief to be diagnosed.”
She said it was vindication in the face of doubters, too.
“I felt like running up and down the street telling everyone to shove it,” she said, laughing.
Her husband, Kevin, said that for a long time he, too, was confused about what was happening.
“During that time, I was probably one of them who thought she was crazy,” he said. Kevin has since learned that his response is common among spouses of MS patients because the person “looks fine.”
“It took me a few years to grasp, this is a disease,” Kevin said.
Diagnosing MS usually takes two or three years, Dawn said, and it’s more about “wiping things off the list.”
MS is an abnormal response of the body’s immune system, in which it is directed against the central nervous system — the brain, spinal cord and optic nerve. The immune system attacks myelin, the fatty substance that surrounds nerve fibers, as well as the nerve fibers themselves, according to the National Multiple Sclerosis Society website.
When the myelin sheath or nerve fiber is damaged or destroyed, impulses traveling to and from the brain and spinal cord are distorted or interrupted, according to the website, causing a wide range of symptoms.
Dawn has loss of feeling in her hands and full-side right-body weakness, she said.
“The muscles have started to atrophy. I have trouble swallowing,” she said. “Walking is difficult because my gait is definitely off. Sometimes the pain is want-to-cry pain. Nothing will take away the pain.”
She has trouble hearing in one ear, dizziness and balance issues, “which are very common,” she said. She also has short-term memory loss.
“The fatigue is debilitating,” she said, and affects the whole family.
The couple have a 22-year-old son who attends the University of Arkansas Community College at Morrilton, and four daughters, whom Dawn has home-schooled.
She said a friend who teaches English has helped her when she can’t teach, and the Loudens are considering putting their children in public school next year.
Kevin and Dawn gave up their dream of opening a catering business when her symptoms got worse, and they live within walking distance of his job, now, at EZ Roll Casters Inc. The Loudens said his employer has been flexible and supportive in their situation.
Time is of the essence now, Dawn said.
She found out there is a secondary-progression MS, where the disease “just continues to get worse until you die.”
“I’m on the cusp, and that’s why it’s so important that we get this done now,” she said.
“The main treatment has always been shots of medication that are very, very expensive — $60,000, $80,000 a year,” she said.
The chances of the medicine slowing the disease are only 34 percent, she said. She took the shots for six months in 2008.
“It made me so sick, like having the flu,” Dawn said.
Now, oral medications are used. Dawn isn’t using the oral medication because of the risks, but she takes 17 pills a day for various MS symptoms.
“I said, ‘There’s got to be a better option,’” Dawn said.
She praised the care she has received at the University of Arkansas for Medical Sciences.
Last year was especially rough, she said. From the end of April 2013 until October, “I really couldn’t get out of bed,” she said.
“My balance was so off I couldn’t walk straight. I couldn’t swallow well,” she said.
“She hasn’t been the same since last April,” Kevin said.
Dawn said the stem-cell transplant, using her own stem cells, is one of the most encouraging treatments she’s found.
“It’s really kind of crazy how it happened,” she said.
While scrolling on Facebook, she saw a group called HSCT for MS. That stands for hematopoietic stem cell transplantation.
“I said, ‘Hmm, what’s that?’ I clicked on it, and it led me on a journey,” she said.
The odds of the stem-cell transplant stopping the progression of MS are 85 to 90 percent, she said.
“I researched it for three or four months, and I knew that’s what I was going to do,” Dawn said.
The Loudens said what’s also exciting about the procedure is that it is being looked at to help other diseases, such as rheumatoid arthritis.
“We’ve heard so many testimonies,” Kevin said. He said the television program 60 Minutes Australia followed a woman with MS who underwent the procedure on that continent.
Dawn said that for the procedure, she would take medication to “make a lot of little baby stem cells,” undergo a four-day chemotherapy regimen, have the transplant and be in isolation for about two weeks.
The trip to Chicago and the procedure are estimated to cost $150,000 to $250,000. After insurance, that’s still $30,000 for the Loudens, she said.
She estimates the trip to Russia, including the procedure and hotel accommodations for a caregiver, at $65,000. Her date for Moscow, Russia, is May 25, 2015.
The May 3 garage-sale fundraiser will be held at the C3 Wrestling Academy, 11 Lancaster Lane. The fundraiser includes a raffle and bid items, she said. A band called Tone ados, the members of which live on her street, will perform from 5-6:30 p.m., and winners of the bid and raffle items will be announced.
Dawn said she has no doubt that the stem-cell transplant is the right move.
“We don’t have to accept pharmaceutical companies telling us these drugs are the answer — they’re not,” she said.
“If that means I get on a plane to Russia next May, that’s what I do,” she said.
“It isn’t going to make me better — the damage that’s done is done — it’s just going to stop any more damage from happening,” she said.
Dawn said she wants to enjoy life with her family and hold her grandchildren someday.
Tax-deductible donations to her transplant fund can be sent to Vilonia First Baptist Church, 1206 Main St., Vilonia, AR 72173. She asked that donors put what she called her theme, “Dawn Beginning Anew,” in the memo line.
Yard-sale donations can be made by calling her at (501) 505-6183.
Dawn also has a Go Fund Me account, www.Gofundme.com/dawnlouden.
Senior writer Tammy Keith can be reached at (501) 327-0370 or at tkeith@arkansasonline.com.