Sharecare4u Blog

Read the details of the 2008 Rare Neuroimmunologic Disorders Symposium which took place in Seattle from July 16 to 20 at: http://www.myelitis.org/rnds2008/index.htm

Dr. Dorri Phipps was awarded the Lupus Foundation of America’s 2008 Spirit Award, at the LFA’s National Conference, in San Antonio, Texas, on July 24, 2008.

Dr. Dorri Phipps is a lupus survivor,for the past twenty four years, and a proud member, of the Omega Omega chapter, of Alpha Kappa Alpha Sorority, Incorporated. She is passionate about finding a cure for lupus and providing persons , of color, with information about lupus.

Dr. Phipps has been instrumental in spreading lupus awareness, throughout the United States,by having lupus adopted as a health initiative, by the Notable North Atlantic Region, of Alpha Kappa Alpha, at a previous regional conference, in New York City. She spoke about lupus, at an AKA conference in
Mississippi, and fostered an ongoing initiative, for lupus awareness, in several of the local churches.

She developed and had implemented, a lupus awareness program initiative, among the members of the Omega Omega chapter of Alpa Kappa Alpha Sorority, Incorporated, and the Philadelphia Alumni Chapter of Kappa Alpha Psi Fraternity, Incorporated.

Through her efforts, she was responsible for the National Conference of Baptist Deaconesses, adopting lupus, as their health initiative,  annual conference, held in Georgia, in July 2008.

She has also established lupus contacts, and provided lupus information, to persons, in several countries in Africa.

Dr. Dorri Phipps extends Special Thanks to Pat Robinson Burns, and the members of the Omega Omega Health Committee, for their constant support, and efforts to raise funds and increase awareness, about lupus, in their churches, beauty shops, barbershops, businesses, at the annual Lupus Loop Walk/Run, and among their friends and neighbors.

LFA

I do believe that wherever we go, whatever we do, we are divinely guided, and sometimes God sends his angels to take care of us. Annie was my angel on this trip to Seattle. I don’t have enough words to express my gratitude, but thank you Annie, for being there for me and taking care of me. May God continue to richly bless you.

The symposium was very educative; I’m really glad i was able to attend, thanks to those who helped me get here. You can find the details on the Transverse Myelitis Association website: www.myelitis.org.

I met many really wonderful people. Sandy of course is like an old friend, though we’ve now finally seen each other, and all the lovely people in the TMA, including Ivan from Sri Lanka. It was nice to see Lew and Farshideh again and to meet Michael and Jody from England.

Then the sisters I met in Washington DC - Dorri, from the Lupus Foundation, the other members of her sorority, and her husband Richard. Thanks for the great ideas, and I’ll keep in touch.

I’ll be putting some pictures up, but more on the trip later…

The symposium on rare neuroimmunologic diseases begins in Seattle today. I also got to enrol in the Accelerated Cure Project by Johns Hopkins. I can’t wait to get there!

This is how the Accra Daily Mail reported the launch.

Facing the challenges of autoimmune diseases in Ghana…
Only 4 Doctors Available
In a country with a population of over twenty million people, there are only four doctors qualified in the field of neurology to confront such a vast area of medicine; this came to light yesterday during the launch of an advocacy NGO – Sharecare Ghana – for people with autoimmune conditions.
The organization has attained international recognition and is affiliated to the Transverse Myelitis Association in the US.

In Ghana, the Noguchi Memorial Institute for Medical Research (NMIMR) has signaled its willingness to begin a study into autoimmune diseases and the College of Physicians and Surgeons has also agreed to lend support to the organization’s efforts.

Speaking at the launch, the Coordinator of Sharecare Ghana, Nana Yaa Agyeman said the aim of the organization is to “reach out to people who have had or are living with long-term illnesses and want to share their experiences, expectations and treatment options.”

“One of our objectives is to campaign towards the inclusion of autoimmune conditions in the National Health Insurance Scheme…At the moment, even though some of us pay our premiums, we still have to pay for expensive tests and medicines,” she said.

Sharecare, she said, is seeking research, better diagnostics and treatment in the area of autoimmune conditions that has been largely ignored in the country. “For example, MRI scans are vital in monitoring many autoimmune conditions and yet, there is only one functioning MRI scanner in Ghana,” she said.
Nana Yaa Agyeman said the unfortunate situation in the country is that some doctors do not accept that Africans are now getting these disorders.

“This is unfortunate because although they were traditionally classified as rare, the diseases have actually been found to be not so uncommon within our society,” she said.
Those living with these illnesses, she said, are not alone. “If you are lonely, this is your chance to meet people who understand and can empathize.”

The National Co-ordinator revealed that the organization has a website through which those affected can share their experiences, expectations and treatment options.
“If you log on to www.sharecare.com, you can read other people’s experiences and also share yours,” she said.

In an address read by Alhaji L. M. Muniru, Deputy Director of Policy Planning, Monitoring and Evaluation at the Ministry of Health, for the Minister of Health, Major (Rtd) Courage Quashigah, the Minister said even though there is no separate policy and programme specific to autoimmune diseases, it can be said that government’s policy on autoimmune disorders falls within the overall policy, goals and strategies of the health sector.

“It is government’s policy to develop systems to reduce the burden of disease, mortality and disability suffered by those afflicted with the disorders and to reduce inequality in access to health and health services,” he said.

Government, he said, cannot achieve all the health policies on its own due to the complex and multifaceted nature of the disorders. Major Quashiga called for private participation in financing health care, since according to him, “the cost of financing health care especially chronic disorders such as autoimmune disorders is very huge”.

He said the government would continue to improve access to health services by expanding health facilities throughout the country. Autoimmune diseases and diseases of the central nervous system often don’t show a clear pattern of symptoms and are therefore difficult to diagnose.

The symptoms may include some or all of the following: numbness, vomiting, loss of body co-ordination and muscular spasms, vision impairment or loss, fatigue, tingling sensation, weight changes, depression, constipation, diarrhea and others.

Autoimmune diseases include the following: Rheumatoid Arthritis, Acute Disseminated Encephalomyelitis (ADEM), Multiple Sclerosis (MS), Transverse Myelitis, Neuromyelitis Optica (Devic’s Disease), Lupus and others. Ghana’s healthcare delivery system is more geared towards the treatment of diseases like malaria, HIV/AIDS, the five killer diseases in children with very little attention being paid to other equally debilitating ailments.

There are practically only two practicing neurologist in the country, whose work load gets heavier by the day as a result of the rising numbers of people being diagnosed with autoimmune diseases.

Presentations were made by Drs. Albert Akpalu (Neurologist) and Ida Kuwornu (Internal Medicine) both of Korle-Bu on the definition and clinical manifestations of autoimmune diseases and Dr. Michael Ofori (Immunologist, Noguchi Memorial Institute for Medical Research) spoke on the “Scientific background to autoimmune diseases”.

Professor Paul Nyame, Rector of the Ghana College of Physicians and Surgeons, who chaired the launch called for the strengthening of the National Health Insurance Scheme. He expressed the regret that it had been unduly politicized and called on Ghanaians to support it to make it work so that the most vulnerable in society could enjoy quality medical and healthcare.

The function was attended by sufferers of autoimmune diseases, their families, members of the medical profession, the media and related NGOs.

The launch of Sharecare Ghana (the association of people with autoimmune conditions) comes on this Thursday under the distinguished patronage of the Ghana College of Physicians & Surgeons.
It will be in the form of an introductory lecture on autoimmune diseases.
Date: June 19th, 2008
Time: 10.00am to 12 noon
Venue: Ghana College of Physicians & Surgeons

For more information call 020 815 7404

June 11, 2008 — Men’s Health and Lupus

From the Lupus Foundation of America

Noguchi Memorial Institute to begin research
Sharecare Ghana holds inaugural meeting
The Accra Daily Mail, Tuesday March 25, 2008

The Noguchi Memorial Institute for Medical Research (NMIMR) is to begin a study into auto-immune diseases in Ghana.
This was disclosed by officials of the institute at the weekend to members of Sharecare Ghana, a support group and association of people with auto-immune diseases and their families in Ghana.
The study being spearheaded by Dr. Margaret Armar-Klemesu, a nutrition expert, head of the Department of Nutrition at NMIMR and Dr. Michael Ofori, an immunologist is as a result of earlier discussions between members of the association and NMIMR on the seeming rise of auto-immune conditions in the country.
Officials of Noguchi agreed that a study needs to be done to establish the numbers as the basis for fuller research into the prevention and possible control of auto-immune diseases.
At the meeting, the Noguchi officials outlined the various diseases classified as auto-immune and the fact that they affect more women than men, but are more dangerous when they do affect men.
Members of the association welcomed the idea of research and said this initiative is long overdue. They said auto-immune diseases should be covered under the National Health Insurance Scheme since they all pay the NHIS tax directly or indirectly.
Founded in 1979, the Noguchi Memorial Institute for Medical Research is considered to be “the leading biomedical research institute in Ghana.”
Sharecare Ghana is the initiative of Nana Yaa Agyeman, herself diagnosed with Devic’s Disease, a close relation of Multiple Sclerosis (MS), and has since attracted many members with similar or related conditions.
Auto-immune diseases and diseases of the central nervous system often don’t show a clear pattern of symptoms and are therefore difficult to diagnose. The symptoms may include some or all of the following: numbness, vomiting, loss of body co-ordination and muscular spasms, vision impairment or loss, fatigue, tingling sensation, weight changes, depression, constipation, diarrhea and others.
Auto-immune diseases include the following: Rheumatoid Arthritis, Acute Disseminated Encephalomyelitis (ADEM), Multiple Sclerosis (MS), Transverse Myelitis, Neuromyelitis Optica (Devic’s Disease), Lupus and others. Ghana’s healthcare delivery system is more geared towards the treatment of diseases like malaria, HIV/AIDS, the five killer diseases in children with very little attention being paid to other equally debilitating ailments.
There is practically only one practicing neurologist in the country, whose work load gets heavier by the day as a result of the rising numbers of people being diagnosed with auto-immune diseases.
Please see ADM editorial.

A good initiative worth supporting
The Accra Daily Mail Opinion, Tuesday, March 25, 2008

The story about Noguchi Memorial Medical Institute agreeing to start research into auto-immune diseases in Ghana is welcome indeed.
This is one area where research, diagnosis, treatment and professional care are almost ignored by the country’s healthcare delivery system, but from all indications, which is as debilitating as any of the more popular ailments that attract all the attention and funding.
Though a Disability Act has been passed by the government, very few people know that many disabilities are as a result of auto-immune diseases.
If disability is so important as to have an Act of Parliament passed to support people with disabilities, is it not equally important for the country’s healthcare delivery system to turn its attention to the causes of some of those disabilities?
That is why we are very happy with the initiative Noguchi has taken to research into the seeming rise in auto immune diseases in Ghana. Funding of course would be the main problem.
We therefore wish to call on health authorities and establishments, philanthropists, corporate Ghana and the international donor agencies to support Noguchi’s noble initiative.
It may be a small area of research but could yield huge amounts of data that would eventually support the treatment and elimination of the better known ailments like malaria and HIV/AIDS.

July 16 to 19, 2008 in Seattle, Washington
We are coming back to Seattle!
Our last symposium in Seattle was held in 1999. We made history in 1999. Dr. Douglas Kerr made his first appearance at our meetings and announced his specialization in TM and the establishment of the TM Center at Johns Hopkins. Dr. Brian Weinshenker made his first public presentation of the results from his ground breaking plasma exchange research. It was the first large gathering of the TMA membership.

The Transverse Myelitis Association and the Johns Hopkins Project RESTORE (the TM and MS Centers) are co-sponsoring the 2008 Rare Neuroimmunologic Disorders Symposium. The symposium is for people who have TM, MS, ADEM, NMO and ON, their family members and the medical professionals who provide clinical care to people with these disorders.

Help us make history … again!

Please mark the dates on your calendar. If you live west of the Mississippi River, you are not going to want to miss this opportunity. If you live east of the Mississippi River, Seattle is absolutely lovely in the summer time. You owe it to yourself and your loved one to make this trip out west. The symposium will be held at the Redmond Marriott Town Center. You can begin making your reservations at the hotel today! To receive our special rate, please ask for the “Rare Disorders Symposium” rate when you call (approximately $170 without taxes). You can make your reservation by calling the hotel at (425)498-4000 or reservations at (800)218-7141. We cannot guarantee you either a room in the Marriott or the group rate, if you make your reservations after June 1, 2008. The program will begin on Wednesday evening, July 16th and will be completed with the dinner banquet on Saturday evening, July 19th.

There will be a separate registration fee which will be announced shortly. This fee covers the cost of the education program, breakfast and lunch on Thursday, Friday and Saturday, and a Saturday dinner banquet. The per person registration fee for our 2006 symposium was $250; we will do our best to keep the registration fee under $300. We will also distribute the program agenda as soon as it is completed. If you would like to get some idea about the quality of our programs, please visit www.myelitis.org, click on the ‘symposia information’ link and review the 2004 and 2006 program agendas. Registration materials will be mailed to our members in the United States and Canada. We will ask our international members to use the registration information and process on our web site.

If you are confused about whether you should come to Seattle, here are the top ten reasons for attending this incredible event.

One. The 2008 Seattle Symposium will be the largest gathering of people with the rare neuroimmunologic disorders; we anticipate that between 200 to 300 people with TM, MS, NMO, ADEM and ON and their family members will attend. If you have never met another person with your condition, this will be a life-changing experience for you. If you have been to support group meetings or other symposia, it will be an opportunity for you to foster the relationships you have established in the past. If you are a participant in the Transverse Myelitis Internet Club, you will likely meet some of the people that you have been corresponding with for the past decade. No one understands your experience in the same way as the other people who will be attending the symposium. Lifelong friendships are made at our symposia!

Two. You will become a better advocate for your medical care. There is no other medical education program in the world focused on TM, MS, NMO, ADEM and ON that provides the breadth and depth of information you will receive during the meetings. You will come away from the meetings with a clear understanding of your disorder. As most family physicians and pediatricians (and many neurologists) know very little about these disorders, you need to be informed about the effective treatments for all of the symptoms of TM, MS, NMO, ADEM and ON. The more you know, the more you can help your physician understand about what strategies are possible to manage your symptoms. You will learn about the treatment strategies for all of the symptoms of these disorders. You will also receive information about emotional support, the role of family in the care process, and other social issues that surround people and their families in coping with long-term illnesses and disability. If you have received one of these diagnoses in the past few years and have never attended one of our educational meetings, you cannot afford to miss this opportunity to educate yourself about your condition.

Three. The Symposium provides exceptional support and information for care givers. You will meet other caregivers such as yourself. Being able to share in your experiences with other caregivers will offer you tremendous emotional support. Many of the connections you make during the symposium will result in lifelong support networks and friendships. You will be provided with information during the presentations that will significantly enhance your own quality of life. You will learn about the importance of taking care of yourself and how your personal well being is critical to the long-term health of your loved one.

Four. All of the physicians from the Johns Hopkins Transverse Myelitis Center and Project RESTORE will be attending the entire symposium and will be making multiple presentations. Many of the physicians from across the country who specialize in these disorders will be attending and presenting at the symposium. Most of the members of the TMA Medical Advisory Board will attend the symposium. You will have the opportunity to meet and talk to all of these physicians at meals, breaks and social events during the weekend.

Five. You will have the opportunity to ask your questions of the world’s experts on your condition. There will be informal opportunities for you to approach all of the physicians during the meals and social events. Most of the physicians also offer the opportunity to ask questions at the conclusion of their presentations. Finally, our symposia conclude with a Question and Answer and Discussion Session. At the Seattle Symposium, this session will take place on Saturday afternoon. You will be given a few hours to ask your own questions and to learn from the responses that are provided to other people’s questions. These sessions are so incredibly informative for our members.

Six. Presentations will be made on the latest research for acute therapies, symptom management and restorative therapies. The brilliant scientists in our community are performing the most incredible research about these disorders and about ways to repair the nervous system. You do not want to miss these presentations. If you are seeking reasons to hope for the future, the information you will be provided about research will most certainly give you the most compelling reasons for this hope!

Seven. Many of the support group leaders attend the symposia from across the country and from around the world. Attending the symposium will provide many of you the opportunity to make connections with the people who are leading these efforts in your state and country. Attending the symposia often gives people the motivation to initiate their own support groups or to lend their support to existing groups. The energy and enthusiasm to get involved in this incredible effort to improve the quality of life for people in our community is contagious.

Eight. You will be invited to a banquet that will be held on Saturday evening; this is the last event of the symposium weekend. This dinner is a true celebration of our community. What has happened to you or your loved one has likely been the most difficult and devastating experience in your lives. You have also likely experienced the love, courage, caring, devotion, persistence, fortitude and will that so many people in our community display in their lives after getting one of these disorders. It is also likely that the suggestion that one could celebrate anything remotely connected to getting one of these disorders would not be possible. But come and see and feel and experience for yourself. We are a special community composed of remarkable people. This banquet provides us an opportunity to celebrate US. Sharing this event will be an empowering, energizing, emotional experience.

Nine. You will have the opportunity to meet Allen Rucker, author of The Best Seat in the House: How I Woke Up One Tuesday And Was Paralyzed For Life. And you will have the opportunity to meet Jim Lubin and to thank him for his incredible 14 years of service to the TMA Community. Debbie, Paula, Pauline and Sandy will be there, as well.

Ten. Your registration fee and travel expenses are deductible as medical expenses on your federal income taxes. Please check with your tax accountant or read the really scintillating Publication 502 for the details and the applicability of this deduction in your specific case.

See you in Seattle!

From the Transverse Myelitis Association

I went to visit someone in hospital yesterday. This was my first visit to the new surgical emergency ward at the Korle-Bu Teaching Hospital, the largest hospital in Ghana, and what I saw there shocked me. Patients on their beds in the corridor; patients on their beds completely outside the ward - in a malaria endemic country?
The staff were obviously stressed, because no one returned my greeting as I walked from one end of the corridor to the other. The VIP ward was nice, but almost empty probably because most people cannot afford it.
In Ghana everything comes down to politics and leadership. The problems in the health care delivery system have been used several times by soldiers to upset our democratic process (progress?); the problems in our health care delivery system have been used on campaign platforms by politicians seeking to ‘lead’ us, but as soon as they are in power they quickly forget their campaign promises. They go for treatment abroad when they are ill, so I guess they don’t notice what the people they are ‘leading’ are going through.
I can compare what I saw yesterday to the pristine conditions at the National Hospital for Neurology and Neurosurgery in the UK and it makes me want to cry. I know we don’t have the same resources, but surely we can do better with where we put patients and the environment for the staff. These are things that do not cost a lot!