"Dangerous lack of understanding"
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Nelda Holder's article on
young Ryan Baldwin and his family ("Home for good? Black Mountain couple
regains custody of son" Mountain
Express 2/24/2010) shines a long-anticipated and much needed spotlight on
more research, proper diagnosis and treatment options for children and young
adults under the age of 18 stricken with Chronic Fatigue Syndrome (CFS). 
The sad case of
Ryan Baldwin and his family underscores the dangerous lack of understanding as
to the serious nature and special care of children with Chronic Fatigue
Syndrome, as well as current objective medical research on the illness.
Clearly, as was the case of the Baldwins, government officials need
better understanding and awareness of the complexities of this illness that
strikes 1 to 4 million Americans including children, teenagers, young adults,
adults, and the elderly, according to the Center for Disease Control and
Prevention (CDC)."
CFS community
advocates for Ryan
In 2009, Pat Fero, director of the Wisconsin ME-CFS association and Jerry Rice, the Baldwin family's local advocate in their home in
Buncombe County, North Carolina brought Ryan's situation to our attention.
County officials had removed Ryan from his family, alleging that his parents
have not provided him with "mental health care and access to a
pediatrician."
Along with 23 other patient advocacy non-profit
organizations, P.A.N.D.O.R.A. mobilized an awareness campaign that included
letters and petitions to North Carolina Governor Bev Perdue, NC State
Legislators and NC Federal legislators on behalf of then 16-year-old CFS patient
Ryan and his family.
We were elated when Ryan was finally reunited with
his family. We were even more excited when Lisa Baldwin, Ryan's mother, joined
P.A.N.D.O.R.A. early this year to help with creating awareness of the issues
that surround families with children with Chronic Fatigue Syndrome so that no
other family will have to go through "the hell" that the Baldwin family
did.
We encourage our members and others stakeholders in our community to leave a comment on the web site page of the article. If you are a parent of a child with CFS-ME, share your story. The "hell" that the family went through should not be in vain. P.A.N.D.O.R.A. is striving to educate physicians as well as the public. You can help us to achieve the level of awareness that is crucially needed.
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Pediatric Chronic Fatigue Syndrome Conference
Committee Forming
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To further address the need for better understanding and awareness of CFS in
adolescents, P.A.N.D.O.R.A., a nationally recognized patient advocacy group
which stands for Patient Alliance for Neuroendocrineimmune Disorders
Organization for Research & Advocacy, Inc., is creating its first patient
and physician CME committee to help plan a conference explicitly dealing with
pediatric Chronic Fatigue Syndrome.
The Pediatric Chronic Fatigue
Conference aims to provide the medical community and government authorities with
the proper training and resources to launch important educational initiatives
that will ensure that children with CFS and other chronic pain illnesses and
their families will be treated with the respect and care that they
deserve.
For additional information about the P.A.N.D.O.R.A. Pediatric
Chronic Fatigue Syndrome conference committee, contact Marly Silverman at: contact@pandoranet.info
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P.A.N.D.O.R.A.'s Mission
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To be one strong voice for many© . . .
- Creating and Raising Community Awareness
- Advocating for Quality of Life Issues
- Providing Support and Educational Resources
- Establishing Partnerships in our worldwide community
- Supporting Scientific Research
- Encouraging Empowerment groups
- Organizing Educational Medical & Patient Conferences
These
goals will assist patients with neuroendocrineimmune disorders and
their families in leading productive and fulfilling lives.
Built on Hope * Strong on Advocacy
Finding a Cure through Research
1 Voice - 1 Community - 1 Cause™
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NEI Center: Our mission statement
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The NeuroEndocrineImmune (NEI) Center(TM) is a community patient-driven grass roots project of P.A.N.D.O.R.A. in partnership with the Lanford Foundation-Lifelyme, Inc.
It is the first research center to incorporate
biomedical engineering scientific and clinical research, and integrating patient
computer aided disease diagnosis and treatment (CADDT) specifically designed
for multi-system illnesses and complex diseases.
To read the entire mission statement and for more information, go to P.A.N.D.O.R.A.'s Facebook Cause Page for the NeuroEndocrineimmune (NEI) Center™.
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