Summer 2016

Advocacy Update

Dr. Ken Gorson, Chair of Global Medical Advisory Board, Dr. Anthony Fauci, Director of National Institute of Allergy and Infectious Disease, Lisa Butler, Executive Director
Dr. Ken Gorson, Chair of Global Medical Advisory Board,
Dr. Anthony Fauci, Director of National Institute of Allergy and Infectious Disease,
Lisa Butler, Executive Director

 

In February, Dr. Koroshetz and other leaders from NINDS met with Lisa Butler, Executive Director, and Dr. David Cornblath, Board member of the Foundation and Medical Advisory Board, of GBS|CIDP Foundation International in January and spoke about different opportunities for research and collaboration between the Foundation and NINDS. During the meeting, a State of the Science Conference was discussed and also there was concern about how to encourage younger
investigators to apply for grants.

In April, Dr. Anthony Fauci and leaders from NIAID met with Lisa Butler, and Dr. Ken Gorson, Member, Global Medical Advisory Board, GBS|CIDP Foundation International in April to discuss the Zika Virus and how the Foundation and the agency can work together. Dr. Fauci spoke about the agency’s response to Zika and the need for robust funding to help combat the spread of the virus. Dr. Fauci also discussed in detail possibilities to work with NINDS and NIAID to expand the research and understanding of the link between Zika and GBS.

Symposium

We asked what you wanted to see at our symposium & WE HEARD YOU!

What did you want most? More time with members & more access to our physicians & we made it happen!

We have carved out time to meet fellow members by both region & diagnosis! We are in this together!

Also introducting (drumroll please!!)…..

Global Medical Advisory Board One on Ones!!! 

Space is limited. We will be offering the opportunity for a group of our members to meet individually face to face with our world-renowned physicians for a private dialogue. Register now to be in the running for this amazing opportunity!

You MUST register for the symposium to qualify & members will be selected at random closer to the event date. If you have already registered please reply to this email with your interest in this new feature.

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View our updated schedule here!

(Subject scheduled to change – more sessions & speakers to be added!)

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CLICK HERE TO REGISTER NOW!

(Please note that registration does not include travel accomodations or hotel lodging.  Reserve your hotel accomodations via the Hyatt Regency here!

All On-Site (day of) Registration will be subject to an additional $25/per person fee)

Need Help? Call the Foundation (610) 667-0131 (Toll Free: 866-224-3301) or email us!

Nurse Researcher, Dwayne Hooks, Has Interest In Better Understanding Patient’s Experience With Guillain-Barré Syndrome

Previous research has revealed that nursing care has been inconsistent and that nurses do not have an understanding of the special needs of the GBS patient. These issues lead to unnecessary stress and discomfort for patients and families. It is important that nurses have the knowledge and resources necessary to provide the highest level of care possible to GBS patients.

A nursing researcher, Dr. Hooks, wanted to better understand the patient’s experience with moderate to severe hospitalized Guillain-Barré syndrome patients in order to frame potential recommendations for improvement in nursing care guidelines, health policy, and education. Dr. Hooks’ qualitative study allowed him to interview fourteen individuals about their experience with moderate to severe Guillain-Barré syndrome. These participants were from eight (8) states representing primarily states located within the southeastern part of the United States. Seventy one point four (71.4%) percent of the participants were female and 28.6% were male. Ages of participants ranged
from 19 to 79. All of the participants were hospitalized anywhere from 5 days to 405 days.

The findings of the study revealed five (5) major themes. First, participants described the manifestations of physical symptoms at the beginning of their illness, what they
thought of these symptoms, and the subsequent progression of symptoms. Participants described the initial symptoms as “strange” or “odd” sensations or peculiar feelings. When participants initially started to experience symptoms, they tried to explain away the symptoms. Participants attempted to relate these symptoms to normal everyday activities and/or occurrences (such as a common illness, stress, or overworking). Most participants described the pace and progression of symptoms ranging from very quick onset to others who had a more prolonged onset. Pain and fatigue was also a major complication for participants.

The second theme centered around the attitudes and emotions that participants experienced during their course of illness. This theme illustrated the wide range of emotions that participants encountered; how having a positive attitude impacted mental well-being and was a useful coping strategy, how independence was desired, and how participants experiencing significant levels of personal disability still had concern for their loved ones well-being.

The third theme concerned the knowledge level of participants at the beginning of their illness and the desire that they had for additional information from caregivers
and other resources. Participants had no knowledge of the illness and utilized multiple methods to learn more about it after being diagnosed. Participants wanted members of the healthcare team to have more knowledge about the illness when directing and providing care to individuals with GBS.

The fourth theme revealed the importance of peer contact. Participants commented on the value of being able to talk with an individual who had also been ill with Guillain-Barré syndrome. This provided the participants with hope about recovery and the future. Participants described that information coming from an individual who had been
through the illness is preferred over information coming from healthcare team members who had not actually been ill with Guillain-Barré syndrome.

The last theme that emerged from the data was related to the general care that was provided. This theme revealed the impact that the lack of staff knowledge had on participants. In addition, this theme presented information related to the concept of personalized patient centered care and communication with caregivers. This theme also illustrated the positive impact that accomplishing achievements has on participants. Dr. Dwayne Hooks will be attending the Symposium in San Antonio this September and will be able to share more about his findings.

These themes suggest that, generally speaking, healthcare team members, including nurses, do not have an understanding of the special needs of Guillain-Barré syndrome patients and that care is not consistent. Additional work and research is needed to enhance the patient’s experience with moderate to severe Guillain-Barré syndrome. Implications are evident in the areas of practice, educational preparation of healthcare staff, health policy and future research.

If you have questions about this research, or if you would like to participate in future studies about the care provided to GBS patients, please contact Dr. Dwayne Hooks at jhooks6@kennesaw.edu. Future research will continue to focus on individuals who have recovered from GBS, as well as families and support systems, and professional and lay caregivers. A list of references for this article will be made available on request.

From the Executive Director

DLisaear Friends,
Seeing is believing! Being Executive Director for the past few months has been quite an experience. I am overwhelmed with pride as I see the activity in the office as our staff (some of whom are featured in this issue) carry out our four pillars with a myriad of activities!

Every day we can find meetings being planned, Walks being organized, reporters being informed, research grants being reviewed, and patient needs being answered just to name a few. The most touching was the response we received from total strangers inquiring about the Patient story from our last Communicator. There was an out-pouring of concern, offers to visit the patient and contact the family who was so moved by all of this. This is the essence of why we exist, and I can’t thank you enough! This also shows how carefully the newsletter is read by the thousands who receive it!

And now, for the event of the year- our next symposium! I look forward to seeing you September 22-24, 2016 in San Antonio, Texas. Electronic registration is now open on our web site or you can also complete the form in this newsletter and mail it to us! The response to date is at an all-time high. We offer something for everyone – patients, caregivers, friends and medical professionals in addition to the history and charm of San Antonio!

Looking forward to meeting you personally in San Antonio, I am, as always, here for YOU!

Sincerely,

Lisa Butler Executive Director

Patient Story By Aledawi Figueroa

My name is Aledawi Figueroa, but everybody calls me Widy. I am from Isabela, Puerto Rico. I’m currently 34 years old.  I am happily married with my husband Obeth Soto.  We have 2 children, Alanis Valeria who is 7 and Obeth Julián who is 1 year old.  I studied Business Administration, majoring in Industrial Management and Human Resources.  After I finished college I continued studying Education, which is my passion, concentrating in Special Education.  I love personalized instruction so I founded Smile Again Learning Center, Corp in 2005. Here we offer tutoring, English and Spanish courses, test prep reviews, among other services.  I love spending time with my family, readingWidy Summer eComm and helping others.  I’ve always worked with youth groups in church and together with my husband we give motivational talks to groups and couples.  My favorite quote is “what is darkness for you today can be light for others tomorrow”;  meaning that no matter how hard you’re having it today, you can be sure that your experience will help someone tomorrow.

This is exactly what GBS confirmed in my life.  In November 2013, me and my family were living a dream come true.  I was finally pregnant with my second baby, this time a baby boy.  Alanis had asked for a brother ever since she was able to talk and her prayers had finally been heard.  We were all excited because the pregnancy was going perfect.  In February 2014, 18 weeks into my pregnancy, my hands and feet started feeling numb and tingly.  I texted my doctor and she said it could be from water retention due to pregnancy.  But a couple of days later symptoms started getting worse, my tongue started feeling tingly, as well, and I could no longer walk on my own.  That’s when I fell to the ground while taking some pre-baby pictures with my family.

At this point my husband knew that it wasn’t water retention and we called the doctor.  She asked to see me the very next day and called in a neurologist and I was diagnosed with GBS.  I got treated in the hospital with immunoglobulin and was transferred to a rehab center.  I couldn’t be given any pain killers because I was pregnant, so I went through it all with the help of God, my family, my friends, prayers from many many people, and my set goal to be able to walk when my baby was due in July 2014.  After many therapies and exercises, most of them in a pool in order not to put pressure on the baby, I was able to walk and hold my baby when he was born.  It was a tough journey but I’ve always felt that it was a blessing from God.  I have faith that God has a purpose for everything and that everything happens for a reason.  With this life changing experience I have been able to help many people, some with GBS syndrome and others that are facing tough challenges in life, and I hope to be able to help many many more.