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Local family feels vindicated by breakthrough research

Friday 17 September 2010

The Baldwin family
Confirmed: Last year, the Baldwin family of Black Mountain
fought a legal battle to get their son, Ryan, back home;
this month, a breakthrough research test confirmed
the diagnosis they suspected.

From the Mountain Xpress:

Local family feels vindicated by breakthrough research

By Nelda Holder in Vol. 17 / Iss. 08 on 09/14/2010

Editor’s note: Earlier this year, we reported on a Black Mountain family's experience after an unidentified source accused Lisa and Rodney Baldwin of medically neglecting Ryan, their only child (see "Home for the Holidays," Jan. 6, and "Home for Good?” Feb. 24 Xpress).

Although he’d been diagnosed with chronic fatigue syndrome and declared medically disabled by the Social Services Administration, the Buncombe County Department of Social Services took custody of Ryan, who spent 10 months in three separate foster placements. The family was reunited last November.

The one-page letter dated Sept. 1, 2010, contained the following statement:

"I wanted to inform you that your son Ryan's tests indicated that he has positive [sic] evidence of XMRV in his blood sample drawn by PSI several months ago. As you know, we are just at the beginning of understanding what this means and what the implication may be for Ryan and your family."

The letter, addressed to Lisa Baldwin, was signed by Judy Mikovits, director of research for the Whittemore Peterson Institute for Neuro-Immune Disease (http://www.wpinstitute.org/xmrv/index.html), located at the University of Nevada, Reno. The institute has been in the forefront of recent, groundbreaking research into the association of the XMRV retrovirus with myalgic encephalomyelitis/chronic fatigue syndrome, in collaboration with the National Cancer Institute and the Cleveland Clinic.

The family had worked with "advocates knowledgeable about the institute" to get Ryan enrolled for testing, Lisa explained. Getting the positive test results, she said, has made them "more optimistic that treatments will follow that will help Ryan."

"We have lived with Ryan's disability for over six years, and getting this news has definitely impacted us as a family," she wrote in an e-mail to Xpress. "The knowledge we now have and are making public will remove some of the public's doubt inflicted by DSS," she continued, referring to the charges filed against them. "I am happy to see one solid thing in our future, even if it means once again dealing with an unknown condition, this time called XMRV."

Ryan, who turned 18 in July, continues to live with his parents (and his dog) while working toward his high-school diploma online. Xpress interviewed him recently; here’s what he had to say:

Mountain Xpress: What are your thoughts/feelings about (a) having participated in this groundbreaking research, and (b) your test results?
Ryan Baldwin:
(a) First of all, I feel very fortunate to have even been included in the research in the first place. I know that there are many other patients out there who are waiting to be tested, and I’m very grateful that I was given the opportunity to be tested so quickly.

(b) Knowing now that I have XMRV helps me remain optimistic about future treatment options. It is also reassuring to now have a concrete explanation for some of the symptoms and problems that I have experienced, especially those of the immune system.

When you were in the custody of the Buncombe County Department of Social Services, did you think you were receiving appropriate care for someone with your diagnosis? If not, why not?
The entire 10 months that I was in the department’s custody, I felt that the treatment I was given was neither appropriate for someone with chronic fatigue syndrome nor for someone who is considered medically disabled.

I was placed in the care of foster parents who were told that nothing was medically wrong with me. I was put in homes that were not wheelchair-accessible, [where] I would be forced to climb steps. In addition, I was given physical and psychological treatments designed to either exercise my disabilities away or to convince me that they didn’t exist in the first place.

Do you have any suggestions concerning training or education for social-service workers investigating medical-neglect complaints in a situation like yours?
I definitely believe that changes need to be made in how social workers handle these sorts of situations. However, it isn’t going to be as simple as additional training. There is a severe lack of general understanding when it comes to certain disabilities in this case and others like it.

No amount of simple training or extra guidelines is going to help ... until the public as a whole is better educated in and understands the complexities of these illnesses.

Is there anything else you'd like to say?
Not understanding or having no desire to learn about CFS is no excuse for widespread ignorance. Be it in the medical field, legal system or just everyday life, efforts need to be made to reform the system with a better understanding of this illness.

— Freelance reporter Nelda Holder can be reached at nfholder@gmail.com.

The article originally appeared here.

 


 

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