FOUNDING DIRECTOR
Estelle L. Benson
EXECUTIVE DIRECTOR
Ken Singleton
OFFICERS
Philip Kinnicutt, President
Joel S. Steinberg, MD, PhD, Vice President
K. Robert Doehrman, Vice President
Ginger Crooks, Treasurer
Patricia H.
Kassandra Ulrich, Secretary
BOARD OF DIRECTORS
Sue D. Baier
Elizabeth Emerson
Santo Garcia
Thelma Gifford, RN
Susan Keast
Glennys Sanders
Laura E. Stegossi, Esq.
Marilyn Tedesco
MEDICAL ADVISORY BOARD
Arthur K. Asbury, MD
Richard J. Barohn, MD
Mark J. Brown, MD
David Cornblath, MD
Marinos C. Dalakas, MD
Peter D. Donofrio, MD
Jonathan Goldstein, MD
Clifton L. Gooch, MD
Kenneth C. Gorson, MD
Michael G. Graves, MD
Angelika F. Hahn, MD
Thomas L. Hedge, Jr., MD
Professor Richard A.C. Hughes
Jonathan S. Katz, MD
Carol Lee Koski, MD
Richard A. Lewis, MD
Robert Lisak, MD
Gareth J. Parry, MD
David S. Saperstein, MD
Kazim A. Sheikh, MD
John T. Sladky, MD
Joel S. Steinberg, MD, PhD
Pieter A. van Doorn, MD
Hugh J. Willison, MBBS, PhD, FRCP
CONTACT US
International Office
The Holly Building
104½ Forrest Avenue Narberth, PA 19072
1.866.224.3301
1.610.667.0131 Fax: 1.610.667.7036
Fall/Winter 2011
Providing Strength Through Support
Message from the Executive Director
In my short time as Executive Director with the Foundation, one thing that stands out above and beyond all else is PASSION. Each person I have met cares deeply and genuinely for patients, family members, caregivers and the cause. I am honored to be in such a committed community. With over 29 years working with
in an outstanding organization.
I am very excited about joining the Foundation at a time when we are planning for 2012. The year 2012 is going to be big for the Foundation. I encourage everyone to check out our new website
I recognize and appreciate that you made the Foundation a success this past year. In the coming year I commit to listen to your input as we shape the new site and expand the support it facilitates. Look for details in the future on the website and in your mail about the 12th International GBS/CIDP Symposium, October
In addition to checking out the new website, I have a favor to ask. Updating everyone’s contact information will be the key to expanding and improving our communication. This update can be done by either calling the office at
Thank you for your past support. I am eager to see how much we can accomplish together in the next year helping all people impacted by the disorders.
Best wishes during the Holiday Season,
Ken Singleton
May your holidays be filled with peace, joy, and love. A very Happy New Year to everyone.
The staff of the GBS/CIDP Foundation International
We take this opportunity to thank CSL Behring for their support in making this newsletter possible through an unrestricted educational grant.
Printed on recycled paper.
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Letters to the Editor
I was eight when I was diagnosed with GBS. I am 29 now, no wounds, no scars, no nothing. Back in 1990, I remember I woke up one day and I couldn’t move my legs. My parents took me to a doctor but he wasn’t able to determine what was wrong with my body. They thought I was joking. A few days later my symptoms got stronger. Numbness in my whole body (I kept telling my parents I felt like an army of ants was walking down my skin), my voice changed... I was definitely sick. Finally they took me to the emergency room, where some doctors, after a few exams, told them that I had GBS.
One day, one of the most difficult ones, my fingers got purple because my blood was running out of oxygen. The doctors said I needed a tracheotomy but my parents said they didn’t want to see their daughter breathing through a tube. The next day, miraculously, the symptoms started to slowly disappear. I spent more than five weeks at the hospital. I had to learn to crawl again, then to walk again, jog again, write again, eat again, and today I’m a really and incredible healthy person. If you see me walking down the street, you couldn’t tell I suffered from GBS! Even though I was a child and I can’t remember most of what happened to me, I can assure you that the love and support of my family members were crucial.
Marcela Estrada
of Columbia, South America
In March of 2008 I was at my 6 year old son’s Baseball game, playing catch with him, helping him warm up. I started to feel like I had pulled the muscles in the back of my legs, but just sat down to rest thinking nothing of it. Within a week, I had so much pain down my lower back, and legs that I went to see my doctor. She gave me some mild pain reliever, and home I went. The next day, I went to another hospital 42 miles away for a second opinion, received an MRI, and was told it was something in my neck. I received a neck brace and was sent home. The next day I woke up to the side of my face drooping. I was petrified! Back to my doctor who told me to go to the ER 42 miles away to see a nerve doctor. Within ten minutes of being in the ER I couldn’t move, and I was in the most pain I have experienced in my life! They admitted me to the ICU. Thankfully the paralysis did not go higher than my stomach. Daily they would check my breathing, and run tests. After two weeks they finally diagnosed me with GBS. But I still did not know how I contracted it. I am so thankful for my husband, son, and mother, as they were there daily (driving 42 miles each way) to be with me. I had a lot of emotions, guilt being the first. How do you explain to a six year old what you yourself don’t understand? And hearing that he is afraid his Mom is going to die? (Talk about a motivation to get better!) I slowly got better, went through rehab, and am now walking again. Although I still have problems with pain, and some numbness in my face, legs, and feet, I feel like a survivor! I am grateful every day for my family, and my strength that I have found through all this.
Chris Rowles of Hamilton, Montana
On September 7, 2011 my five year old daughter, Emma Rae, called me from the top of the stairs, “Mommy my legs hurt, and my head hurts from the sun.” She had been battling a cold since the first week of school so I feared she had meningitis. I rushed her to our pediatrician’s office. With strep ruled out, I proceeded to take her to the ER where after a buffet of tests we still had no definitive diagnosis. After three days of severe pain, hypertension, double vision and increased weakness/paralysis, a new neurologist was obtained and the diagnosis of GBS was made. Not a minute too late for her airway was severely compromised at this point. We transferred to another hospital where a second spinal tap was done the super high protein level assured our doctor that it was indeed GBS. Finally, we had our answer. As a mom and a health care professional I knew in my heart that something was terribly wrong. After five days in the PICU/five more on the pediatrics floor our next step was aggressive physical therapy. We transferred to Primary Children’s Hospital in Saint Louis City on September 20 where her hard work paid off. After ten days she walked to my husband at the airport when we arrived home. She has just completed her first full week back to kindergarten. She is amazing and an inspiration to all!
Raelene Scheidler of Henderson, Nevada
Disclaimer Information Questions presented in the GBS/CIDP Newsletter are intended for general educational purposes only, and should not be construed as advising on diagnosis or treatment of the
Privacy Policy In response to many queries: Intrusive practices are not used by the GBS/CIDP Foundation International. It does NOT sell its mailing list nor does it make available telephone numbers! The liaisons are listed in the chapter directory with their permission. Our CIDP and
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Patricia Blomkwist, Board Member, Honored by Queen Beatrix of the Netherlands
Patricia Blomkwist, in the presence of Queen Beatrix, received a “Crown” on September 30th at the 55th anniversary of the Princess Beatrix Fund Jubilee Symposium entitled “Ensure Independence” held in Utrecht, Netherlands. The “Crown” was presented by Laetitia Griffith, President of the Fund, and is an award for individuals or organizations that have done exceptional work for people with neuromuscular disorders. For her dedication over the past two decades Patricia Blomkwist received a “Crown.”
Since Patricia Blomkwist was struck by Guillain- Barré Syndrome, she has been working with dedication to help people with this disease. In addition to her role as a Board member for the GBS/CIDP Foundation International, she is active in the group
Princess Beatrix Fund Fundraiser in Rotterdam
A most unique fundraiser was held by the Princess Beatrix Fund on September 27th during which 57 people went abseiling from the Euromast in Rotterdamn. Abseiling is a controlled descent by ropes from a steep pinnacle, otherwise known as rappelling in English. Pieter van Doorn, MD, of the Netherlands, a member of the GBS/CIDP Foundation International Medical Advisory Board, was the first to go down, joined by three people of his team. Two time GBS
survivor, Marianne van Mierlo, a member of the Netherlands support group, also participated. Ms. Mierlo was only one week shy of her 71st birthday when she decided to take the plunge as she abseiled from the crow’s nest (331 feet high) of the Euromast which is 607 feet high. The proceeds of over €14,673.82 will go to Dr. van Doorn’s research for GBS. Since the founding of the Fund in 1956, Queen Beatrix has been the patron of the fund. The Fund invests in scientific research and is committed to improving the quality of life of patients and their families. Over the past ten years the fund has raised over €25 million available for research.
On September 10th Ruth Elster and her husband Bob, in gratitude for her recovery from Guillain-
Barré Syndrome, hosted an afternoon at their vineyard at Arrowhead Mountain in the Sonoma Valley.
Guests enjoyed a sumptuous lunch along with a wine tasting from the vineyard. Dr. Carol Lee Koski, renowned neurologist and member of the GBS/CIDP Medical Advisory Board made a presentation on the latest developments in the treatment of GBS and CIDP. Twenty one people attended, including Marilyn Tedesco, a GBS/CIDP board member and her husband Lou, and California liaisons Beverly Copeland and Russell Walter. The event brought in over $1500.
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The Inspirational Story of a Nurse Who Overcame a Tragic Illness
By Ruthann Devine, Account Manager, Crescent Health Care
Experiencing adversity is simply part of the human condition. This is a story about a woman, who when faced with the most tragic curveball of her life, rose to
the occasion and didn’t give up. Vulnerability is a sign of great strength. Pam Wrobel (our liaison in Greenville, South Carolina) happily shared her story from a place of humility and gratitude. She truly inspired me and I feel honored to know her.
June 27th, 1994 was the day that changed the trajectory of her life. Pam was a thirty year old operating room nurse on a neurosurgical team in a hospital in Greenville, SC and a new mom in a new home, with a seventh month old son and a husband on that infamous day. This day was like no other. She started having a “weird numbing sensation in her feet and the left side of her tongue.“ She went to work as usual and jokingly mentioned her symptoms encouraging her co- workers to diagnose her. By the weekend her symptoms were no joking matter as they had rapidly progressed. Intense pain radiated down the backs of both legs as well as her back and she suddenly had a feeling of impending doom. Something was wrong and she couldn’t figure it out. Desperate for relief, Pam had a friend take her to the emergency room where she tried desperately to help the neurologist figure out what was causing these horrible symptoms. She told the doctor that she had been cleaning her new home over the weekend and wondered if perhaps the cleaning agents could have triggered this problem or perhaps she was bitten by a tick. Pam’s attempts at a possible solution were dismissed and she was sent home with a prescription for Ativan to alleviate her anxiety. On July 5th she went to work still symptomatic with numb fingers and bone scans were done. July 7th Pam was having great difficulty with balance and was incredibly weak. One of the doctors she worked with told her to go to the lounge and he would check on her between patients. Upon doing so, he admitted her to the hospital immediately. Following many tests which included a spinal tap, he shared the words she’d never forget; “looks like it’s going to be a long road ahead for you Pam.” He told her she had GBS, and that she’d probably not be home before Christmas. Devastated, but determined to prove her doctor wrong, Pam worked overtime to regain her mobility. Debilitating pain, weakness and numbness advanced until she was essentially a quadriplegic on a ventilator. Continuous support from her mother and coworkers helped to keep Pam focused on overcoming all of her limitations. Nurses were hesitant to go in her room because they felt scrutinized by the constant stream of “professional” visitors. During her extensive hospital stay she received many infusions of IVIG and plasmapharesis, rehab with PT and OT
which included wearing AFO braces on her legs every 2 hours alternating with
consulted the NIH (National Institutes of Health) where federally funded research is done. She was given higher doses of IVIG which resulted in a major improvement in terms of her response to therapy.
Being a nurse and a patient gave Pam the ability to be her own best advocate. Pam reflected on the insensitivity and lack of common sense of one nurse who actually tried to give her pills as she suctioned her own secretions. She recalled the frustration the nurses felt with her because she insisted on wearing her AFO braces every two hours. As a patient, Pam said she had a heightened awareness in terms of tone, sincerity, and respect. She was at her most vulnerable place and couldn’t believe the insensitivity of some caregivers.
Eventually Pam was able to walk again and thought she’d resume her position as an OR nurse but her job was no longer available. This turned out to be an unexpected blessing as she was placed in a
I contacted Pam to see how I might support her efforts because in addition to being a
When asked if she could enhance her dual roles in any way Pam stated she would love to incorporate art into what she does for her GBS patients. She recalled how rubber stamping and playing the piano helped her regain her fine motor skills in her hands. She marvels at how much her angel pillows are valued by her patients.
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Treatment of the Residual Effects of GBS with Dalfampridine
By Gareth J. Parry, MD,
Professor of Neurology, University of Minnesota
Member, GBS/CIDP Medical Advisory Board
The most common form of
weakness and sensory loss could also be due to incomplete remyelination. The chemical
conduction in the central nervous system (CNS) in experimental studies. It does so by blocking the potassium channel in the wall of the axon. In incompletely remyelinated axons the potassium channels are exposed and potassium leaks out of the axon, leading to loss of the ability of the axon to conduct the electrical impulses.
There are important differences between CNS and peripheral nervous system (PNS) myelinated axons. Firstly, the CNS remyelinates much less effectively than the PNS; it is possible that there is not significant potassium leakage in the PNS because the axons have more effectively remyelinated so that
ROBERTBENSON RECEIVESAWARD
At theOctober 29, 2011 Board of Directors meeting Robert Bensonwaspresented with an award for his many years of service to the Foundation as the founding patient and as a dedicated Board member.
Robert Benson and Ken Singleton
SAVE THE DATE
• • •
The 12th International GBS/CIDP Symposium
will be held in
FortWorth,Texas
October 26 - 28, 2012
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Chapter Meeting Highlights
This fall was a busy time for chapters across the country. 21 support meetings were held since August – Hartford, CT (2), Dallas, TX, Minneapolis/St. Paul, MN, southwestern Virginia, Akron/Warren, OH, Indianapolis, IN, St. Louis, MO, King of Prussia, PA, Rochester, NY, Salt Lake City, UT, Raleigh, NC, Denver, CO, Atlanta, GA, Chicago, IL, Seattle/Tacoma, WA, Portland, OR, Charlotte, NC, Clearwater/ Tampa, FL and Blue Springs, MO.
What would you be able to take away from a GBS/CIDP Support Group Meeting? Here are some recent comments from some of the meetings.
•“Thank you for these meetings. I really appreciate them and come home with something new. Keep up the good work.”
•“Thank you for all who made this meeting possible. Very helpful to meet other GBS/ CIDP patients – sometimes simple exchange of personal stories is the “medicine” we need. I hope the chapter keeps going.”
•“Wonderful program, three of my patients from IVIG infusion suite came with their spouse and they all enjoyed the experience.”
•“Great presentation – 1st time attendee.”
•“Wonderful program, great information.”
•“Good meeting, I learned a lot.”
•“Thank you for all your hard work. It helps to know that I am not alone. I have been told that I am a “head case” and that there is nothing wrong with me. It helps to know that there are others.”
•“This was my first meeting and I would definitely come back for another and bring more family members. I am grateful this exists and that everyone has taken the time to put so much effort into so many lives.”
•“Very informative, glad I was able to attend.”
•“This was a great presentation and a great chance to meet others with the disease. I am looking forward to more meetings. Thanks!”
Dr. Arthur K. Asbury Honored
as “Citizen of the Year”
On October 28, 2011, the GBS/CIDP Foundation International awarded the “Citizen of the Year” award to Dr. Arthur K. Asbury, a member of the Medical Advisory Board. Two hundred people were in attendance at the College of Physicians in Philadelphia, including those from as far away as Paris, England, Netherlands and Israel. Among the Honorary Committee were Robert and Estelle Benson. Dr. Asbury was honored for his many contributions to medical education and our understanding of the limits and pathogenesis of
Don Gilden, MD |
Estelle Benon |
Carol Lee Koski, MD |
Dr. Arthur K. Asbury |
Austin Sumner, MD |
Maryann Johnson, Richard Baringer, MD, |
Dr. Asbury speaking |
Peter Johnson, MD and Professor Gerard Said, MD |
|
Ken and JoAnn Singleton with Santo Garcia |
Patricia Blomkwist and Elizabeth Emerson, Esq. |
Professor Gerard Said, MD and Gareth A. Parry, MD |
Ralph Neas and Joel Steinberg, MD, PhD |
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From Therapist to Patient and Back Following GBS
By Lizbeth Albert, Roanoke, VA
On March 6, 2003 I went from being an ambulatory Physical Therapist to a
mentioned the recent numbness in my toes. His diagnosis: I had pulled a muscle in my back and the numbness was due to pressure on the nerves from increased muscle tone. He prescribed a muscle relaxant and bed rest. The muscle relaxant did not ease the pain but contributed to my falling down twelve steps. The numbness had increased which impacted my balance.
I was admitted to the hospital with a diagnosis of pneumonia which did not address the tingling numbness in my feet. After two days I was discharged with a prescription for an antibiotic and an appointment for a follow up chest
Typically thoracic surgery patients are ambulatory. Operating on a paralyzed patient is not the norm. Following the operation the surgeon told me that he had expected to remove a
As the motor control began to return to my legs I was transferred to a rehabilitation unit. Now I became the rehab recipient and began to experience what many patients feel. Exercises are boring and I hate counting to ten. You say I can trust you, you won’t let me fall, but I don’t trust
you. I don’t want to stand or do therapy today, I’m tired. I promise I’ll do more tomorrow/later. I am afraid and so tired. What if I can never walk again? What will become of me? Therapists are mean, they don’t care or understand how I feel. I learned how frightening it is to transfer using a sliding board and to stand up when you know you cannot prevent yourself from falling. I experienced the true job of regaining the use of my body which I had taken for granted. At that time I was 63 years of age.
Three months after my admission I was wheeled to the hospital front doors. I asked the transporter to stop the wheelchair. I locked the brakes, stood and walked to the back of the wheelchair, unlocked the brakes and then joyfully pushed the wheelchair out to the car. I was determined to leave under my own power.
Home health came three times a week for two weeks which was all insurance would approve. The rest of my recovery was up to me. Daily I went to an athletic club and walked the track, went to exercise classes, worked on the strengthening machines and swam. On the treadmill I worked on balance and endurance on level and inclines while performing breathing exercises and I “pushed” myself. The hard work paid off. Today I walk on all surfaces without shortness of breath and the upper lobe of my left lung has expanded to fill the thoracic cavity.
Though able to retire early on disability I felt a strong desire/need to return to work. Fifteen months after I was stricken, using a single point cane for balance, I returned to work as an evaluating/supervising therapist and medical chart reviewer. Through exercise and constantly challenging myself I regained the strength, balance and confidence to return to work as a full time home health Physical Therapist.
Today, seven and
“Update on CIDP” Coming to a Location Near You
The GBS/CIDP Foundation International will be hosting the first in a series of special meetings for CIDP patients only in Towson, MD on Saturday, January 28, 2012 from 10 a.m. to noon at the Towson University Marriott Conference Hotel. This “Update on CIDP” will help you sort out your diagnosis and treatment. The speaker will be Dr. David Cornblath, Professor of Neurology and Neurosurgery, Johns Hopkins University, and a member of the GBS/CIDP Medical Advisory Board. Look for invitations to these events throughout the year in a city near you.
U.S. Postage
PAID
Permit No. 726
Wayne, PA 19087
International Office
The Holly Building
104½ Forrest Avenue
Narberth, PA
CHANGE SERVICE REQUESTED
DIRECTORY
Check the enclosed chapter directory and contact the chapter nearest you. In addition, our “subgroups” are listed below.
• “CIDP” Group
For those with a diagnosis of chronic inflammatory demyelinating
• Children with GBS
Call Lisa Butler,
Son, Stuart had GBS at 5 1/2 years old
• Children with “CIDP”
For children diagnosed with chronic inflammatory demyelinating polyneuropathy. A separate registry has been created. Please contact the National Office for details.
• Group for Having GBS Two Separate Times
Please call the National Office for contact with others.
• Miller Fisher Variant Group
Please call the National Office for contact with others.
• Wheelchair Limited Group
Please call the National Office for contact with others.
• AMSAN Group
Please call the National Office for contact with others.
• A Teenage Pen Pal Group
Arielle Challander,
Traverse City, MI 49684
Arielle had GBS in 2006 at age 13. She is willing to share experiences that others might not understand. To have a teenage GBS’er pen pal, write, call or
• Pregnant Women with GBS
Robin Busch,
New Canaan, CT 06840
Robin has offered to share her experience with GBS which came about during her pregnancy. We have many such cases and reassurance from someone who has gone through this is needed support.
• Bereavement Group
A group for anyone who has lost a loved one due to GBS/complications. Please contact: Bereavement Group at the National Office.
• The “Campy” Group
Those whose GBS onset was identified as a result of the campylobacter bacteria. Numbers to be used for research purposes.