http://danvillesanramon.com/print/story/print/2009/01/02/voyage-of-recovery


DanvilleSanRamon.com

Cover Story - January 2, 2009

Voyage of recovery

Danville woman among those pioneering new treatment in China for a cure to her inherited disease

by Geoff Gillette Oct. 28: Priscilla and I are all moved into our room on the 20th floor of the hospital in Hangzhou. I have had tests, been interviewed several doctors. They will tell me after some evaluations if I am healthy enough for the bone marrow

Those were the first words Joanne Loveland posted on her blog when she and her good friend Priscilla checked into the Xiaoshan Hospital in Hangzhou, China, on a journey to find a cure to a hereditary disease that has affected many members of her family.

"We have a genetic condition in our family called ataxia. It is not well known, but it is similar to MS and Parkinson's disease," she said.

Ataxia affects the central nervous system, causing its victims to experience atrophy in their cerebellum. It affects balance, speech, coordination and is progressive and incurable. As it works its way through the victim's systems, they also begin to experience weakness and loss of energy.

Loveland said the family first became aware of the illness when her grandmother began to experience symptoms. "She was diagnosed with late onset MS." It wasn't until later that doctors realized the misdiagnosis and pegged ataxia as the culprit.

"We didn't know as she was dealing with it that it was an inherited thing," said Loveland. "She started seeing symptoms in her 60s, my father started to see it in his late 50s."

Ataxia has affected Loveland's grandmother, father, aunt, brother and herself. The 59-year-old Danville woman said it has come upon her gradually, but she is seeing the effects of the disease now as well.

"I do notice when I'm walking I have balance issues. I am wobbly. Balance is the major thing, along with some speech and minor coordination," she explained.

The erosion of her skills affected many aspects of her life. The mother of two grown children, Loveland had been working at the Diablo Lodge until July when the situation became untenable. She has been unemployed since then.

Because the disease is said to be incurable, Loveland and her family did what they could to hold off the symptoms through physical therapy and exercise. Still their hopes rose when a cousin informed her that he'd seen an ABC Nightline program about a hospital in China working on a host of illnesses using stem cells.

The program dealt with a company called Beike Biotech. Beike has rented hospital facilities all across China and set up care facilities where patients suffering from a variety of illnesses can come for stem cell treatments.

Stem cells are cells that have not been assigned to a specific task in the body. They are found in most if not all multi-cellular organisms.

Humans have two types of stem cells:

* embryonic, which come from either the umbilical cords of newborn babies or from amniotic fluid; and

* adult stem cells, which work with another type of cell called a progenitor cell to act as a repair system in a grown human.

When injected into the body, the cells have been seen to act as a repair and strengthening agent. They go to an area of weakness in the body and differentiate to become the type of cell necessary to assist the weakened area. They can become almost any type of specialized cell.

In the United States, stem cell research is currently against federal regulations, so in order to get treatments involving stem cells, it is necessary to go out of the country.

Loveland said when they heard about the work being done by Beike Biotech they began researching what they could about stem cells and ataxia. They found that Beike was working with ataxia patients, as well as many other diseases.

"People from all over the world are going there for these treatments. People with MS, Parkinson's, they are trying out these stem cell treatments, and a lot of them are seeing results," she said.

After more research, Loveland's brother went to China for the treatment. "You go over three-and-a-half weeks, and you get five transfusions, one as an IV and the other four are given in the spinal cord."

Loveland said she was heartened by the reports she was getting back from her brother regarding his condition. "He couldn't believe how much better he felt after each treatment. He had no complications, his body didn't react negatively to the stem cells."

With that positive response, Loveland made the decision that she, too, would make the journey to Hangzhou and undergo the procedure.

"It's definitely a leap of faith, an adventure," she said. With a cost of over $24,000 for the entire procedure, it's also a major financial commitment, something Loveland said she thought hard about but ultimately did not let stand in her way. "This is a treatment that helped my brother to get back a lot of function. He still has good days and bad days, but he can see the difference. I think it's worth it to try."

One of the reasons that stem cell research is currently not allowed in the U.S. is the implications of using cells from newborns or amniotic fluid. It has become a focus of much debate. When asked if she was worried about people's reactions to her seeking such a treatment abroad she said she's not encountered any negative reaction. "A lot of people know I'm going and most are like, 'Wow, that's great.' Most want to follow what's going on while I'm there. You feel more like you're being sort of a pioneer."

She added that Beike's treatments don't utilize the amniotic stem cells, which although more potent do present some risks in obtaining them. "They use the umbilical cells. The umbilical cord is really just a piece of tissue that is being thrown away when the baby is born. They're taking umbilical cords, harvesting the stem cells and putting them in a medium where they can be transfused into patients."

In late October, Loveland and her best friend Priscilla boarded a jet and embarked on the trip to Hangzhou. There were no problems getting to the hospital and getting checked in. She said she was both nervous and excited to get the procedure under way. "They warn you that after the lumbar (spinal) punctures you could have really bad headaches. I just wasn't sure what was going to happen."

Oct. 31: Wednesday I had my first stem cell treatment which was a piece of cake because it was by IV. They do an IV treatment first to make sure you do not have an allergic reaction to the stem cells. In 30 minutes I am going to have my first lumbar stem cell treatment. Wish me a great spinal experience with no headache after.

Over the course of the nearly four weeks she was there, Loveland underwent the stem cell transfusions, but also had a daily physical regimen she was required to follow. The course of treatment prescribed by Beike followed both scientific and wholistic approaches. Bone marrow was transfused to harvest Loveland's own adult stem cells, which were then injected into the spinal column to shore up damaged nerve tissues.

Physical therapy was held each day as well as acupuncture, all working toward the single goal of strengthening Loveland's damaged central nervous system and giving back some of the function she had lost.

Nov. 2: My first lumbar stem cell transfusion on Friday afternoon went well with no bad headache. Tomorrow I am going to have my bone marrow transfusion. They will extract some of my bone marrow from my hip. They harvest the marrow for five days and then they give me another stem cell treatment with my own stem cells. Many of the patients here have received this treatment. It is very new, but everyone is hopeful it will increase the success of the treatments.

Everyone here is positive and grateful to be here. Patients have MS, ALS, spinal injuries and brain injuries as well as Ataxia. There are 13 rooms for patients on this floor and every room is occupied.

In her blog Loveland talked about the gradual realization that she was seeing improvement. "I noticed at dinner that I was not stiff when I got up to leave. My balance when walking felt very good walking back to the hospital. I believe all these treatments together are helping."

Nov. 8: Today I had my regularly scheduled acupuncture and physical therapy. I wasn't as good with my balance today. I know there will be good days and average days. I will receive my own stem cells from my bone marrow Wednesday this week.

We are realizing how lucky I am compared to many of the patients here.

Loveland's final blog entry before returning home showed a renewed feeling of accomplishment and hope for a future with greater mobility, speech and coordination.

Nov. 12: Wednesday I had my bone marrow stem cells returned to me in my spinal column. It went very smoothly and today I am feeling stronger than ever and I feel my speech is better as well. I can't say enough about how wonderful the nurses and doctors have been on the 20th floor. The staff are all young, but very professional and helpful.

Now back in the U.S., Loveland has begun resuming her life in the wake of her journey. Already she has noticed a definite improvement. "My energy level is higher. My balance is better. Before, if I carried a glass of water across a room it would splash out because my gait was more jerky. Now I can carry a glass of ice tea to a table and not splash it. My walking is more normal."

Loveland said her doctors told her to expect to see continued improvement over the next few months as the stem cells continue to regenerate.

Even with her successes she remains cautious in her optimism. "This whole stem cell thing is not a cure but it does improve the things you are dealing with. For me, it's speech and coordination."

The big question, though, is does she feel it was worth it? The expense, the time, the procedures? Loveland says absolutely yes. "I feel like I had to do this because it helped with the research. I am a pioneer in this. People are coming from all over to do this to see even a slight gain because it improves quality of life. I am very grateful."

Successes using stem cell technology are beginning to appear all over the world. Four European doctors recently replaced a woman's windpipe with a donor organ, using stem cells from the woman's own body to line her throat to lessen the chances of rejection. Successes in spinal surgery have also been reported, using stem cells to help damaged tissue and nerves to heal.

Research in the U.S. could begin again in early 2009, as President-Elect Barack Obama has said one of the first things his administration would do in office is lift the presidential ban on embryonic stem cell research. Loveland said she is excited by the president's statements and feels it will spur some great advances in the research. "I know there are biotech companies in California and the U.S. that are just waiting for these restrictions to be lifted so they can get right into this."

Meanwhile Loveland's pioneering journey shows that there is a chance for those throughout the world suffering from degenerative nerve disorders to return a sense of normalcy to their lives. "It's given me a lot of hope for the future for eliminating the symptoms of ataxia and other illnesses. Hope is here."

Comments

Posted by Dee Grimmick, a resident of Danville
on Jan 6, 2009 at 9:08 am

Joanne: I am so happy that things went well for you

Hoping that it continues

Dee


Posted by Teresa, a resident of another community
on Oct 15, 2009 at 1:44 pm

Joanne, I was diagnosed with Fredrich's Ataxia last year, my gait and speech have gone downhill, my writing is terrible. I'm at the point I don't dare to answer the phone. I cannot go up and down the stairs at all.

I'm very glad your stem cell treatment works so well, watching your video, hearing you talk and walk with a cup of water is an encouragement to me.

Can you email me and tell me more about Qingdao Hospital.


Posted by William Low, a resident of another community
on Sep 6, 2010 at 12:15 am

Hi,

Before I go for treatment, can I get in touch with you through emails? (I have SCA....a kind of ataxia.....serious.)

All the best,
William.


Posted by William Low, a resident of another community
on Sep 6, 2010 at 12:38 am

Joanne,

Oops...........my email is williamlow8@gmail.com