| Parents Against Medical Abuse Location-Asheville, NC |
We are a family located near Asheville, NC. A city
surrounded by the beautiful Western NC mountains and
the Blue Ridge Parkway. Asheville is the location of the
famous and beautiful Biltmore House and the lovely Grove
Park Inn. Local tourist attractions abound here and people
travel to our area and take pride in our surroundings.
Asheville is home to the Reuters Children's Outpatient
Clinic and Mission Children's Hospital -known as the best
children's hospital in the area. Medical care is touted as
being the best the area has to offer and we are home to
Mission Hospital's Heart Center -voted top 100 in the
nation and a top 50 endocrinology hospital.
As a family, we have lived here practically all our lives- in
Western NC. We thought Asheville and the surrounding
area was the place to be, a wonderful place to raise our
children. Then our son became ill in 2003 and our local
medical community- based in Asheville and surrounding
areas- became our family's greatest nightmare.
Our son was 11-years-old when he became ill. Four long
years have passed since then, and nothing has changed.
The lack of medical awareness with our son's illness and
medical abuses continue to this day.
Our son also was a straight A student. He excelled in the
educational world of Buncombe County Schools for over 6
years before becoming ill. Today- every educational, medical,
and civil right he should be entitled to has been taken from
him.
When he was too sick to school with a homebound teacher
during the week (being homebound since the start of his
illness 2003) a Buncombe County Sheriff Deputy showed
up on our door. Our son was classified medically fragile and
because of severe blood pressure issues- stress was
always to be kept to a minimum. But intimidation in this
county of Buncombe runs deep, and no one regulates
anything. Homebound teachers spent sessions telling our
son that he was "not really sick" and to get off the couch if
they were to school him. When they came they would do
things like read death and dying stories and spent sessions
telling him how well he looked and that he needed to be in
school.
Even after spending two years with a supportive physician
trying to educate an entire Buncombe County School
system; and relying on national people to assist, as well as,
relying heavily on our local educational advocate. Nothing
could protect us or Ryan's education.
Today we must educate Ryan alone without assistance
from Buncombe County Schools and we must pay for his
online/correspondence educational program -Keystone
National High School ourselves- with the financial
assistance from family.
Even the Office For Civil Rights flew two attorneys in for
our son's case in 2005 -at least that is what we were told.
However today we must say that within days- we became
aware of what problem they really handled when they came
into Buncombe County. The word circulating, is that my
son's case was thrown aside as the lawyers had true
business to handle in Buncombe County that day and that
my son was not it. But instead the trip was made for the
lucky recipient of the 80,000 discrimination settlement
and a promise of a principals position. We were last on the
agenda that day- as the attorneys rushed us -so as not to
miss their plane.
The word was already out and circulating that OCR had
come to town to help an educator and left the student with
nothing.
Because of the lack of medical awareness and
discrimination - pertaining to ME/CFS/CFIDS within our
local medical community and even within our own state of
NC - receiving any support from people close by that could
assist us -was next to impossible. Ryan was often too
severe to travel out of the area for medical care and we
were practically buried under medical lies, altered medical
records and almost destroyed as a family.
Fear kept us quiet- for over 4 years. Only with the ongoing
support from the advocates for over 4 years- have we
become credible outside our community and able to finally
expose such a horrific nightmare.
Hidden from the beauty of our mountains are the stories
and tragedies of the residents of Western North Carolina
and those people that remain hidden from public view. Our
son's life over the past 4 years is one of those stories. It is
a story that a medical community often hopes will remain
hidden - a medical nightmare. However, it is a story which
our family feels it must now expose. In doing so we hope to
obtain appropriate local health care from ethical and moral
physicians. Physicians who practice medicine because they
want to help patients. We also hope through exposure of
our medical dilemma, to gain access to the best specialists
in the US. Specialists who can help our son or at least be
knowledgeable enough to offer him" the best care medicine
has to offer"
In the local Asheville area, we hope to one day be able to
access basic medical care for our son without
discrimination- such as an antibiotic to treat an infection
and routine blood work without having to travel to
Charlotte, NC- a close to two hour trip for us.(one way)
The treatment we are receiving as a family is horrendous.
We realize as a family that the medical community here in
Asheville appears to not claim any experience with our
son's diagnoses - ME/CFS/CFIDS and severe autonomic
dysfunction. Both diagnoses cause very complex and
provable body system- wide problems.
We feel that not providing our son any medical care is
neglect... we also feel that a physician leaning toward his
lack of knowledge in these illnesses while blocking even
basic medical care -is wrong.
It is also in violation of the NC Medical Board's stated duty
to educate physicians in our state- to allow this lack of
knowledge by physicians to remain prevalent is wrong.
I would say that 50% of the NC population knows what
AIDS/HIV is -now why do people not know what CFS/CFIDS
is? Why do NC DHHS employees not?click here to read
email from DHHS.
If a doctor can diagnose an illness in the state of NC then I
feel it is also that state's obligation to educate the public on
that illness- Starting with the agency responsible for
educating the public -The NC Department of Health and
Human Services.
It is also the state's obligation to prevent discrimination
based on disability. Just the games that are played in
Buncombe County are blocking all medical care for our son-
this including basic medical care- it is almost beyond
comprehension. To be a citizen of the state of North
Carolina and tell this story is an embarrassment
nonetheless. To be subjected to what we have been
subjected to as a family is a horrible injustice. We feel it is
also preventable with a little educating and that once a
person opens their eyes past discriminating against an
illness that we as a state are uneducated about -much can
be done to stop the discrimination.
For the fearful doctors that are being told by the insurance
companies to drop CFS patients -it's your opportunity to
turn the tables- and stand up for yourselves and for all the
patients that you know are facing exactly what I describe.
Discrimination and blocking of medical care. We are not
alone and I know that. But one family experiencing this is
one too many. Please help us and stop the abuse!
Medical science is lacking in our son's case. Therefore he
may be misdiagnosed. But for now he carries an ME/CFS
diagnosis -diagnosed at Johns Hopkins since 2004 and also
a diagnosis of severe autonomic dysfunction diagnosed by
Mayo Clinic and he is medically disabled. To dispute his
illness is not up to a local medical or educational community
to do . Especially when those in the community have zero
experience pertaining to the illnesses he has-including
physicians. If the ignorance of the medical/educational
community continues, we feel it will open up an entire
community to face many civil rights violations as they
pertain to their involvement with our son and discrimination.
As a social worker myself, I am aware that sometimes only
through forced learning does the ignorance and
discrimination stop- history proves that.
A physician in NC does have the right to refuse medical
care (true)------- as long as that refusal of medical care
does
not violate a patient's civil rights. Our son is medically
disabled.
Our plight is to locate physicians who are educated about
our son's diagnoses and how best to help him using sound
medical training. Our public appeal's goal is to hopefully
through disclosure people will gain knowledge, and with
that knowledge will come awareness. We feel as parents
that the awareness will protect other families with similar
illnesses. We hope that exposing our situation to the public
may somehow educate a community on a problem that
should never occur in today's society.
Hopefully educating on and exposing our family's story will
enable us to put a stop to the medical abuse. The abuse
that prevents us from accessing appropriate medical care.
It is difficult living in today's society with what has been
dealt to our son - his illness, but it is harder fighting a
medical community for appropriate health care, while
exhausting all available financial resources.
We sit as parents, unable to get our son to the people who
could ultimately help him - while we play medical games
which generate thousands of dollars for physicians.
This is all concealed from the publics eye. We call it medical
abuse and we are asking for help and protections.
Our son does not have a local primary care physician that is
knowledgeable about his condition, willing to learn or even
willing to take on his "complex medical condition".
We have no local medical care.
Wonderful medical specialists (all located outside of
Asheville ) are involved and are currently caring for our son
in the capacities that they are able to assist -but only
within their own respective specialties.
While in Charlotte recently on medical ,we learned of new
findings regarding our son's health and his heart. But
years may have passed before this recent diagnosis was
found -as we were blocked locally of testing and a right to
basic medical care and any diagnostics. Ryan was too
severe to make trips to Charlotte
As ME/CFS advocates this is our greatest fear as parents -
that the medical community may have it all wrong (Ryan's
Diagnosis) and therefore be blocking a child that has been
misdiagnosed and needs medical intervention and additional
testing.
Insurance companies must love a ME/CFS/CFIDS
diagnosis -it is an immediate block to medical care and since
doctors are pressured to drop patients with this illness,
insurance companies save money.
Diagnostic testing is blocked -
Not because there is not anything medically wrong with
CFS patients...............but because there is and the medical
care required for a CFS patient could be exorbitant.
Exposing this to the public as we have in our family, might
someday entitle everyone with this illness to rights they
have never been entitled to. The illness is time consuming
and in a business world time is money. The medical
community does not have time for our son. But he deserves
medical care nonetheless and a life free of discrimination.
We are uneducated as a society regarding ME/CFS/CFIDS
because it is not cost effective to know about it. Read
Hillary Johnson's book Osler's Web ....just a page or two.
Or click here. We have known about this illness and its
seriousness for over 25 years. She exposes it all and she is
also sick with the illness. She lets us know what we did with
the experts in this illness. ...they are listed on the link page
above. Dr. Paul Cheney is here in Asheville NC.
The CFIDS Association of America sits in Charlotte NC.
The best doctors were once residents of our NC state.
That should be the history that we teach our kids. Our son
would not face the discrimination he does- if we were
educated.
He also would be screened for other conditions if his
medical care were not being blocked because he carries a
ME/CFS diagnosis. It is quite possible he does carry a
mis-diagnosis and has just been thrown into this
"wastebasket diagnosis" to cut medical ignorance from
being revealed and cut insurance costs.
We have done a huge injustice to everyone with this
diagnosis and research is being hampered because we do
not care enough about this population who carry the
diagnosis. Awareness is hampering research as we tell a
public how many people there now supposedly are out here
with this illness to lessen it's impact . It opens the
floodgates to those medical professionals wanting to
classify patients to cut costs because it may be difficult to
locate what is truly wrong with them........easier to just
throw them in the basket. People who have this illness-
know it because they are truly disabled.............not just tired
and facing a presumed mental crisis or life stressor.
I have never seen anyone suffer from such a horrible
biological illness and yet receive no support......except with
my own son and all the others I speak with who have this
illness.
As a social worker and CFS advocate, I plan to continue to
advocate for all people who are mistreated because they
are diagnosed with this illness. I also want to help fight for
the possibly misdiagnosed (including my son ) who are
blocked further testing because they carry a CFS diagnosis.
I feel it is a preventable death trap.
You do not want this diagnosis and until our son receives a
life with protections- free of discrimination based on
illness.................even we don't want our son to carry the
diagnosis. As a family we are now supported by a large
and caring CFS world...............on a national level. Thanks to
Pat Fero- one of Ryan's advocates and many of the other
CFS advocates out there. But it's still not enough. We
must care as a society and that is going to take a lot of
work. Please sign our guest book (located on contact us
page) if you'd like to be part of our national plight and let us
know if we can use your comments to petition a change.
Parents Against Medical Abuse
Location-Asheville, NC
LisaBaldwin-BSW
| Web site posted 11/24/07 |
| Click here for Black Mountain Newspaper story on our son in 2005 |
| The information posted on this website contains many facts as well as our opinions. The medical information listed however is as factual as possible. If you feel that we have made an error in any listing- please contact us. Since we have requested the medical record by certified mail for over 4 years yet have been unable to obtain any medical record from Cigna for 4 years, we have done our best to list the medical information using the records in our possession. We have hired legal assistance and are now trying to obtain the medical record from BCBSNC our new insurance company. It has been 5 months since our original request to BCBS NC. We feel this refusal to give us our son's medical records just compounds the medical abuse obvious throughout this website. Unfortunately- access to any medical records is not an entitlement in our son's situation either. |
| "Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all." Dale Carnegie |
"Each time a man stands up for an ideal or acts to improve the lot of others or strikes out against injustice, he sends forth a tiny ripple of hope." Robert Kennedy |
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Ryan (July 2008 ) in
his Lifenets donated
power wheelchair 6
months before DSS
took him into custody in
order to conduct a
medical experiment.
This experiment
included taking his
wheelchairs from him.
his Lifenets donated
power wheelchair 6
months before DSS
took him into custody in
order to conduct a
medical experiment.
This experiment
included taking his
wheelchairs from him.
(Click here) to go to Free Ryan Baldwin from Buncombe County DSS website 2009 |
