Monthly Archives: September 2006

Talk of the Times with JoAnn Spalnick

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Talk of the Times with JoAnn Spalnick

Staff writer Mauri Rapp talks with JoAnn Spalnick, organizer of the Third Annual Walk 2 Miles in My Shoes for RSD, which will take place Oct. 8 at McDade Park.

Age: 59

Residence: Jermyn

Family: Married to Michael Spalnick. The couple has one son, Steven, and a grandson, Tyler. A daughter of the late William and Elizabeth Sica, she has four siblings.

Background: Helped establish Coal Cracker Cruisers with her husband in 1999. Was employed as a quality control inspector at the former RCA plant in Dunmore when she was struck by a car in 1980. After several years of chronic pain, she was diagnosed with Reflex Sympathetic Dystrophy (RSD), a neurological malfunction that causes the nervous system to send pain signals to the brain. She began the Walk 2 Miles in My Shoes event in 2003 to raise money for the research and treatment of RSD.

Q: How did you get the idea for Walk 2 Miles in My Shoes?

A: After the accident, I wanted to get awareness out about RSD. It affects over six million Americans, yet so many people still don’t know about it. The walk brings awareness not only to the people of Northeastern Pennsylvania, but also to doctors and nurses from the area that are still learning about the disease.

Q: Has it been difficult organizing the event?

A: I do what I can when I can do it, and I have had a lot of help. My family helps with refreshments, and local businesses also donate food.

Q: How many people will participate in the walk?

A: Last year, we had about 400 walkers, and we expect to have at least that many this year. We will also have a car cruise during the walk, and more than 72 cars will be on display. Administrators and nurses of Dr. Schwartzman, chairman of neurology at Drexel University College of Medicine, will be attending because all proceeds will go toward Dr. Schwartzman’s research for RSD.

Q: What would you like readers to know about the walk and about RSD?

A: The walk will be a great opportunity for us to raise money for awareness and research for RSD. Experts are unsure why certain people are more susceptible to RSD. The illness is caused by trauma to the nervous system, but it can be caused by something as minor as a sprain. Unfortunately, the symptoms can be similar to those of multiple sclerosis or lupus, so research is crucial to finding out why RSD occurs, and how to treat it.

Q: What do you like best about the event?

A: The event is exciting because I get to meet other people with RSD, trade stories with them about the illness and discuss treatments. The walk lets fellow RSD sufferers know that there is help out there and it helps more people find out about the illness.

Q: What else would you like readers to know about the Walk 2 Miles in My Shoes?

A: I want readers to know that we have a fun day planned. People bring their kids and dogs, and refreshments will be available. I also want fellow RSD patients to know that they must persevere with every breath and that word is getting out there about RSD.

Click Here For The Original Article Online


Bettsville teen faces pain with no gain

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Ashley_Schwochow, originally uploaded by rsdscrpsnews.

Bettsville teen faces pain with no gain

By MaryAnn Kromer,

When Ashley Schwochow fractured her right ankle during basketball season in 2004, she never expected the injury to change her life; however, instead of healing in the usual way, the ankle became more and more painful.

At the time, Ashley was a freshman at Bettsville High School. Since then, she has learned about the rare disease she has developed — reflex sympathetic dystrophy syndrome, also known as complex regional pain syndrome or RSD/CRP. The progressive, neurological disease produces chronic burning pain that may be triggered by the slightest touch or movement.

“It’s a reflex disease, and usually, it doesn’t spread, but there’s an 80-percent chance it’s going to go full-body. Mine is half-body. … I have no mobility on the whole right side,” Ashley said.

Although Ashley told her doctor about the burning sensation when he removed the cast from her ankle, he said the healing process takes time and advised her to be patient. He also implied she might be exaggerating her discomfort to miss more school.

“I came back a couple weeks later, still on my crutches. I wasn’t able to put pressure on it. He took an X-ray. He was twisting it and I was screaming,” Ashley recalled. “He said, ‘There’s no break, therefore, I think it’s still sprained — or you’re making it up. I guess I can send you to Toledo.’”

Larry Schwochow, Ashley’s grandfather, said the doctor’s response was typical. In researching RSD, Larry and the rest of the family have learned the pain it causes is more serious than what is normal for an injury. RSD typically follows a fracture, wound, infection or surgery. The disorder can be traced to the Civil War.

“They originally called it ‘causalgia.’ When soldiers the soldiers would get injured, the injury didn’t match the wound. the wound would heal and they’d still have pain,” Larry said.

In Toledo, doctors took more X-rays and sent her to a clinic for injections. They told her a series of six epidurals ought to alleviate her pain. She believes they knew what she had but they didn’t mention RSD or CRP. Ann said Ashley’s symptoms did subside for about a year. She had a check-up in spring of 2005.

“They said, ‘You can go back to your regular activities. You can play volleyball and basketball. Of course, I did,” Ashley said. She twisted the ankle again in volleyball and the pain spread to her knee.

A specialist Ashley saw in Fremont wanted her to return to Toledo. The Fremont physician used the term RSD, which Ashley and her mother had not heard before; yet there it was in her records.

“Me and my mom looked at each other. … We were shocked. We didn’t know what it was. He said he wanted me to go back up and get more epidurals. I said, ‘I want to know what this is,’” Ashley said.

“She had to grow up fast,” Ann Schwochow said.

“From this, I’ve become very strong and they treat me as an adult. … I’ve had to deal with a lot of stress that most teenagers don’t have to worry about till they’re in their 30s,” Ashley said.

After an extended stint on crutches, Ashley’s arm gave out. An EMG showed a trapped nerve that may need surgery. Her parents obtained a wheelchair and moved her bedroom to the first floor. Ashley has learned to write and eat with her left hand, but she cannot bathe or dress herself.

Even with a diagnosis, the pain has been difficult to treat. All together, Ashley estimated having about 14 lumbar blocks over two years. She developed scar tissue in her back from the numerous injections that had provided only temporary relief. Also, the epidurals may have expanded the RSD into Ashley’s hip and elbow.

The next stop was rehabilitation at the Cleveland Clinic. The doctors spent two hours examining Ashley and confirmed a serious case of chronic RSD. They suggested a trial of electrical stimulation to block the pain. Electrodes were implanted in Ashley’s left shoulder blade and attached to an electrical device. She could adjust the current to the level she could tolerate.

After a few days, the inflamed tissue was irritated further by the vibration of the stimulator.

Instead of blocking the pain, the treatment worsened it. The doctors tried a different technique to administer epidurals, but even a large dose of anesthesia did little to numb the pain. Ashley said it was excruciating.

“They did a port and tried some heavy-duty medication in the lower part of her spine, but she didn’t respond to them,” Ann explained. “They can’t find anything to knock her out.”

The port was removed after a short time, and Ashley tried desensitization therapy. She said she was able to tolerate a cotton ball or tissue touching her right hand, and she even progressed to folding laundry.

Next, the therapist placed a pillow beneath Ashley’s right foot and instructed her to let her foot rest on the pillow. When Ashley hesitated, the therapist suggested touching her foot down as she was folding the towel. Ashley said the two actions together sent her into unconsciousness and convulsions. She was transported to the emergency room for oxygen.

Since that episode, the teen has not had such severe reactions, but she and her parents said they fear the RSD will move on to the left side of the body. If that happens, Ashley could lose the limited mobility she still has. Since the initial injury, RSD has migrated all the way to Ashley’s jaw. Although she can bend her right elbow and move her foot slightly, that side of her body remains hypersensitive.

Ashley now is being treated by Dr. William Bauer, a neurologist in Bellevue. Bauer has done several years of research on RSD. At Bauer’s suggestion, Ashley has begun a special diet and hyperbaric oxygen treatment, or HBOT.

“It’s not just for RSD. They use it for diabetics and MS (multiple sclerosis),” Ann said.

Patients are placed in a pressurized chamber. Oxygen is forced into the tissues to push out toxins and heal the nerve endings from the outside. A helmet maintains regular pressure on Ashley’s head. She travels to a facility in Wauseon for the therapy.

“It’s not a hospital. It’s a place called ‘Sarah’s Garden.’ They have a hyperbaric oxygen chamber,” said Larry. “They’re the closest ones in the area that have the chamber. We talked to some people that have had some success with it, so we’re going to give it a go.”

The family said it is hopeful because the HBOTs have enabled another RSD teen they know to return to school. Rides in the car are uncomfortable for Ashley, but she has been staying at a place called Jackson House that does not charge for lodging.

Through a phone call Sunday, Ann gave an update on Ashley’s progress. After 20 treatments, Ashley has regained some movement in her right hand. Her doctors say they should know more in another week or two. If the results are positive, they are to give Ashley a break for two to four weeks before starting her on another series of 40 treatments.

In addition, Ashley takes 12 prescription medications twice a day and wears a patch that dispenses fentanyl, a drug usually given to chemotherapy patients. Ashley has been told her pain levels are “off the charts.” The medications and inactivity also have caused other difficulties for the teen.

“The doctor said if they can’t revive me now, there’s no way I’m going to be better. They said even after I’m able to limp, I’ll still have a couple years of physical therapy, just to get back (in shape),” Ashley said. “I’ve gained a lot of weight. I used to be really athletic.”

The loss of independence also has been difficult. Ashley had only been driving for a few months when she had to give that up. She had been volunteering at Fremont Memorial Hospital in hopes of getting a job there. Instead, she has been disabled for nine months.

“I wanted to be a nurse, but there’s no way,” Ashley said.

She said her mental skills also have deteriorated. College-level courses may be too difficult. Right now, Ashley is focused on finishing her high school subjects. Although she has missed a lot of school, she has been able to do course work on the computer.

“That’s something that just happened because of this,” Larry said. “The school got with Sandusky County Learning Center and set up this online learning program through the Sandusky County Education Association.”

He said school system officials were able to get the program online so Ashley could access it from their home computer. Now she can stay in touch with her teachers by e-mail. They also stop in to meet with her from time to time. Her mother said it has worked out very well.

“She needed a tutor and she wanted her teachers from school to do it … (The computer) makes it easier because we don’t know when she’s going to be up or down. We couldn’t really give them a time. That way, when she’s feeling better, she can go on the computer and do her work,” Ann said.

Even so, home-schooling has its difficulties. The former honor-roll student has not been able to keep up with her classmates. Last year, as a junior,

Ashley was taking two science classes, history and math. She was able to complete the math class with frequent visits from her teachers, but she still is trying to finish the science courses.

“It just feels like my life was ripped away. I’m only 17. I’ve had to do a lot of stuff that most people never have to deal with,” Ashley said.

If anything positive has come out of Ashley’s ordeal, she said she believes it is a greater emphasis on safety at her school, not just for athletes, but for everyone. Also, she said many Bettsville students have learned about the disease and become more aware of it. Ashley said has taken phone calls from people asking about her symptoms and where to go for treatment. She tells them as much as she can to help.

“It affects about 200,000 people in the United States,” Larry said.

“In the beginning, we did so much research … some doctors don’t even know what it is,” Ashley said. “It does a lot of damage, physically and emotionally.”

At times, she said she wondered if the pain really was in her head, as the doctors implied. Meditation, relaxation techniques and mental imaging has given Ashley some relief. She said fear of the intense pain makes it difficult to sleep or do anything that might trigger it. She has received physical therapy at St. Francis Health Care Centre in Green Springs.

The research says RSD is rare in teens and more common in women than in men. An increase in hair and nail growth in the affected limbs is a trademark of RSD. The skin becomes tender, red and hot to the touch, as if it were burning from within. Ann gave up her own employment and income to care for Ashley.

“Dr. Bauer has had patients for 10 or 12 years, and she’s the worst one that he’s seen so far,” said Stephen Schwochow, Ashley’s father.

The HBOT is costly, and the Schwochows said Medicaid may not cover it. The family has received some assistance from their church, St. John Lutheran in Fremont. They also have planned a spaghetti dinner for Oct. 1.

“The community and friends have been very responsive. A lot of people have donated door prizes and meals. The support system is really tremendous,” Larry said.

“We set up an account for her at the bank, and there have been a lot of 10 and $20 deposits,” Steve added.

Larry and Steve also have made more than 40 collection cans to place at locations in Fremont, Fostoria, Findlay, Tiffin and Bettsville. The family is to use the funds to pay for transportation, co-pays on medications and other items for Ashley’s care. Ann said friends and family are preparing the spaghetti. Ashley has been surprised by the concern people have shown for her.

“In a way, I’m a celebrity, in an un-fun kind of way,” Ashley said.

“She treasures every day,” Ann said. “She realizes she has taken some things for granted.”

“Things like walking and writing her name,” Steve said.

Ashley said she wonders whether things could have been different if she had been told the name and symptoms of her ailment when she was first diagnosed. If she had known to curtail her activities instead of resuming them, maybe the RSD would not have become so severe.

Going back is not an option now. Ashley must be a spectator in the wheelchair that once belonged to her great-grandmother, a resident in a Fremont nursing facility. The teen said she misses the frequent visits they once had, but they can still talk on the phone.

“That’s the only thing I’ve got left,” Ashley said.

On the Web:

Click Here For The Original Article Online


She’s in a painful fight

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centralohiodotcom, originally uploaded by rsdscrpsnews.

She’s in a painful fight
Ashley Schwochow getting help from her family while trying to beat rare disease
Staff Writer

Just two years ago Ashley Schwochow, then a junior at Bettsville High School, was an honor roll student who played basketball and volleyball, painted and even helped teach second grade to mentally challenged and handicapped students.

Now a senior, she is confined to a wheelchair and seeking specialized therapy at a treatment center in Wauseon, hoping to relieve pain from a rare nerve disease that makes it difficult even to take a bath. However, Schwochow is doing everything she can to fight the disease and bring some attention to the disorder. In the meantime, her family is doing whatever it takes to help her in her fight.

“In a way, it’s changed the whole family perspective,” Ashley said during a teleconference call from the center in Wauseon.
The disorder, called Reflex Sympathetic Dystrophy syndrome, is diagnosed two to three more times as often in women as it is in men, according to The Reflex Sympathetic Dystrophy Syndrome Association. The average age when it is diagnosed is 42, and there is no cure. Its symptoms include moderate to severe pain, changes in skin temperature and limited range of movement, and it afflicts between 200,000 and 1.2 million Americans.

For Ashley, it started as a fractured foot while playing basketball in gym class. She went to a local doctor who placed her in a cast until the wound healed. But even after the fracture had mended, she was still often in pain and sometimes had trouble walking. The disorder often starts with an injury such a sprain or a fracture, but with RSDS, the nerves begin sending constant pain signals to the brain even after the injury has healed.

Although she sought medical help numerous times, she said most doctors were not aware of the disorder and she continued her normal activities for a full year.

“It kind of made me learn although (doctors) diagnose you with something, it doesn’t always mean it’s right,” she said.

As the disorder progressed, it crept up from her foot and into her right leg, eventually covering the right side of her body. For a student as active as Ashley, the toughest thing was not being able to play sports or hang out with her friends. Basic activities such as taking a bath or even cutting her fingernails became extremely painful, and even a slight touch or a breeze causes her nerves to send the pain signals to her brain. The disease also affects the skin. Her fingernails have become so brittle, the entire nail snapped off the second the clippers started to cut, her father said.

The last time her nails were cut was several months ago, and what would be a simple process for most was so painful it took five hours.

However, with her family’s help, she is fighting the disorder and is trying to raise awareness for anyone else in the area who might be afflicted. She noted although there seem to be few in the region who have been diagnosed, Internet support groups have been instrumental in helping her and her family understand all that the disorder entails.

But fighting the disease is expensive. Just to cope with daily activities such as eating or sleeping, she now takes more than 20 pills a day. In some cases, insurance companies have refused to pay for the medication even though they have been prescribed because she is a minor, said Stephen, her father. In some cases, it can take three years before the right cocktail of drugs can be found to reduce the pain.

“We were just stunned on how horrible (RSDS) sounds,” Stephen said. “We were in shock.”

Now, she is seeking a specialized treatment in Wauseon using hyperbaric oxygen therapy. Patients are placed in a special chamber that is pressurized, while the patient receives a large amount of oxygen. The goal is to increase blood flow to reduce swelling and the pain. However, the treatment is not covered through insurance.

Ashley’s family has rallied around her, and her mother, Ann, even quit her job to care for her full-time, and has stayed with her daughter throughout this procedure. While Ashley is in Wauseon, Stephen has been making the lengthy drive at least twice a week.

Ashley is hopeful the treatment will reduce the pain and keep her RSDS from spreading. During the teleconference with her father and grandparents, she was excited as she was able to hold her hand in a bowl filled with water and olive oil. Once she has it under control, Ashley said she plans to graduate this year and become either a nurse, or someone who helps educate the mentally handicapped.

Her grandfather, Larry, said it is amazing how the community has supported the family throughout the ordeal. Krista Harrison, Dean of students of Bettsville High School, said the school was even able to enroll Ashley in online courses so she will graduate with her classmates. Harrison was Ashley’s kindergarten teacher, and said she is amazed at what a dedicated person Ashley has become over the years.

“She’s had a wonderful support system in her family and she’s had a wonderful attitude about this,” Harrison said.

The family has had to seek help from the community to help pay for the treatments. Donation cans with Ashley’s photo are spread out in Fremont, Tiffin, Rising Sun and Fostoria. Local banks, churches and community groups have also donated time and money to assist with fund-raisers.

For now, Ashley is simply anxious to continue her treatment and continue to spread the word about the disorder that has had such an impact on her life.

“You take it day by day,” she said. “You’ve just got to think positive about it.”

E-mail Matt Sanctis at

Click Here For Original Article Online


Chronic Pain/RSD Information Expo

Chronic Pain/RSD Information Expo

November 18, 2006, Noon–3:00 PM
Held in the Stained Glass Lobby of
St Joseph’s Hospital & Medical Center
350 W Thomas Road, Phoenix, AZ
Exhibitors: has product solutions and medical supplies that enable independent, safe and pain free living. Erika Feinberg will demonstrate innovative products along with Life Changing Gifts for the holidays. A portion of ActiveForever sales through 12/31/06 will be donated to the RSDSA when you mention RSD

Penny Rickoff, Regional Director of Arizona for the American Chronic Pain Association (ACPA) will discuss their multi-disciplinary approach to pain management & how their chronic pain support groups function.

Vance Hudson, Member/Board of Directors, Arizona Pain Initiative (AZPI) Their goals: To reduce the burden of intractable pain by assuring access to skilled and appropriate pain management. 1) Train health professionals in the community. 2) Expand the base of knowledge of pain management. 3) Provide educational sessions for the public.

Dr. Willem Bos of Bos Chiropractic, Learn about a breakthrough system of care which integrates chiropractic adjustments, nutritional support, detoxification, and emotional stress release into a powerful body-mind healing system.

Colleen Mellgren of E.M.P.I. (formerly Rehabilicare) will have products for pain management, edema and rehabilitation, which have helped thousands of people recover to enjoy a healthier and more active lifestyle.

Kathleen Gross, Patient Services Manager for The Leukemia & Lymphoma Society. Educational programs & services for anyone who has a blood cancer: Family Support Groups, First Connection, Patient Financial Aid, Advocacy Network, Information & Resource Center.

Oasis Rehabilitation Centers are multi-discipline facilities, providing physical (both land and aquatic), occupational, speech and social adjustment therapy. We conduct multiple therapy services at one site, increasing convenience for patients and physicians.

RSD Care & Share Support Group of Phoenix
Information on Reflex Sympathetic Dystrophy & other topics related to living with chronic pain.

Elayn Glena, Director and Therapist from The Center of Muscular Pain & Tension “The Stress Stops Here.”

Vicky Jerdee will have a table with Information for Nurses.

Presented FREE of charge by
The RSD Care & Share Support Group of Phoenix, AZ
For more information, contact Debbie Fisher at 602-826-0072


Health: Chronic Pain

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lg, originally uploaded by rsdscrpsnews.

Health: Chronic Pain
Aug 31, 2006 11:15 pm US/Eastern

Stephanie Stahl

(Click Here To Go To Original Source Page and Watch Video)

(CBS 3) PHILADELPHIA Imagine stubbing your toe or twisting an ankle and developing an unbearable, chronic condition. Medical Reporter Stephanie Stahl reports it is happening to nearly one million Americans, leaving some doctors baffled. One local doctor has an explanation.

11-year-old Rachel Heisler has learned to live with chronic pain, as even playing with her dog hurts. The trouble comes with vibration from just about anything.

“The microwave beeping, the phone ringing, so everyday noise would make it worse,” said her mom Marilyn.

Rachel suffers from complex regional pain syndrome or C.R.P.S. She was diagnosed after a minor foot injury during gymnastics that triggered agonizing, non-stop pain.

“I don’t think there’s any pain in medicine that’s worse than this. You can’t be touched,” said Dr. Robert Schwartzman.

Dr. Schwartzman, an expert in C.R.P.S. at Drexel University College of Medicine, said it’s a chronic pain ailment brought on by even the slightest injury to nerves or nerve endings.

“It starts with severe pain out of proportion to what the injury is. So you twist your ankle, then all of a sudden it starts to swell more than it should,” he said.

Dr. Schwartzman said the pain can spread throughout the body and is virtually unbearable.

While there’s no cure, he said pain medications and some treatments do show benefits, but early diagnosis is critical.

Vance Hudson knows the pain all too well. It took doctors years to diagnose him, and he said the pain has taken over his life.

“I’m no longer employed. I spent a year without any income at all. It impacts relationships. I’m just not the same person I was,” he said.

New research shows that some people may be genetically predisposed to C.R.P.S. and that would explain why some people get it while others do not.

Click Here For Original Article Online


Living With Complex Regional Pain Syndrome

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lg, originally uploaded by rsdscrpsnews.

Living With Complex Regional Pain Syndrome

The Slightest Injury Triggers A Chronic Pain Ailment
Dr. Mallika Marshall, Reporting
Aug 29, 2006 8:26 pm US/Eastern

(This Article Has Video On The Original Site Page)

(CBS4) BOSTON It’s hard to imagine a minor injury, like an ankle sprain, turning into a lifetime of pain. But it’s happening to as many as one million Americans. It’s a disease called Complex Regional Pain Syndrome and doctors don’t know what causes it or how to cure it.

Vance Hudson was diagnosed with CRPS 13 years ago after his horse stepped on his foot. The seemingly small injury ballooned into chronic, intense pain. “I’m no longer employed. I spent a year without any income at all,” explained Hudson. Even standing long enough to make a pot of coffee can be excruciating for him. “It impacts relationships. I’m just no the same person I was.”

Dr. Robert Schwartzman is an expert on CRPS. He says it’s a chronic pain ailment triggered by even the slightest injury to nerves or nerve endings. “It starts with severe pain, out of proportion to what the injury is,” he explained. “I don’t think there’s any pain in medicine that’s worse that this.”

For years people were told it was in their head. But Dr. Schwartzman says new research from Mass. General and other hospitals proves the pain is real. “There’s no question about this anymore,” he said.

There’s no cure for CRPS. Doctors can only help patients manage their pain with drugs and other treatments. The National Institutes of Health is currently funding several studies to try to better understand the disease and develop treatments.

For more information on CRPS you can log onto

Click Here For The Original Article Online


Living with Unbearable Pain

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Living with Unbearable Pain, originally uploaded by rsdscrpsnews.

Living with Unbearable Pain

August 28, 2006 – Eleven-year-old Rachel Heisler loves to watch her brother race, but being near race cars can sometimes cause her horrible pain.

“She would sit in the stands and cry it hurt so bad, but she had to go see him race,” Marilyn Heisler, Rachel’s mother, said.

Rachel suffers from complex regional pain syndrome or CRPS. Doctors diagnosed her after a minor foot injury during gymnastics triggered agonizing non-stop pain. Even slight sounds can bring her to tears. Sounds like the microwave beeping or the phone ringing can make the pain even worse.

Dr. Robert Schwartzman is a CRPS expert. He says it’s a chronic pain ailment brought on by injury to nerves or nerve endings.

“It starts with severe pain out of proportion to what the injury is … I don’t think there’s any pain in medicine that’s worse than this,” Schwartzman said.

For years, Vance Hudson was told the pain was all in his head.

“I’m no longer employed. I spent a year without any income at all. It impacts relationships. I’m just not the same person I was,” Hudson said.

While there’s no cure, experts say pain medications and some treatments can help, but early diagnosis is critical.

“If it got caught early and people understood this, I think we could dramatically stop its devastation,” Schwartzman said.

Support groups give patients like Vance relief. Just knowing there are others like him makes him feel less helpless and alone. Rachel gets a lot of support from her family. She’s improving with various treatments and hopes to continue with a normal life.

“I want to go back into gymnastics, have no pain and go back to school,” Rachel said.

Click Here For The Original Article Online