SSIEM article

[Guest guest]

Terri and :

thanks for the information, but I can't find the article. Once I get to the

site, how do I find the

article?

Thanks

Sue Ellen

_________

Terri Mason wrote:

> Hi Terri,

>

> The message was for , and other interested parties, about a complain I

> sent to the editors, authors and chairman of the Society for the Study of

> Inborn Errors of Metabolism. In respect of reporting of doctor's. Firstly

> the disgraceful way this can be handled, lack of both training and

> professionalism. I have the hard copy, but there will be a brief abstract at

> the site: www.ssiem.org.uk

>

> Article: Personality Profiles of Mothers of Children with Mitochondrial

> Disorders J. Inher. Metab. Dis. 22 (1999) 615-622

> Correspondent: L. Varvolgi and S. E. Waisbren, Metabolic Clinic, Children's

> Hospital, Boston , Massachusetts

>

> I complained, as I felt from a parental & group viewpoint that the article

> seemed to address, discrimination towards parents & mothers of children of

> mitochondrial disease, additionally what & why was there such a place for

> such a critical and un professional article, additionally why pick on

> mitochondrial parents as " Situational Anxiety, Stress, Hysteria & Paranoia " ,

> perhaps the authors should try being parents put in the same situation & be

> asked how they feel. I also would anticipate that most other conditions

> would reveal similar trends in parents, as this is " NORMAL " .

>

> >From my viewpoint having met, spoke and visited so many academic institutes

> from London to Moscow, again we have another article pointing out the

> obvious. Perhaps a more constructive approach long-term care & management,

> informative advice and informed choices. It would appear professionals are

> too ready to criticise parents and have this documented for peer discussion

> and review, when a parent does this. We are labelled.

>

> This practice, must be addressed and perhaps halted.

>

> I would welcome the thoughts of the IMDM group members, as this was an

> article submitted from the USA.

>

> Hard copies can be sent upon request.

>

> I thank, Terri for re-directing may article and message, as I appear to be

> having teething problems, sending mail.

>

> Yours truly,

>

> Preston

> Honorary Director

>

> Children's Mitochondrial Disease Network

> Northwich, England

>

> http://www.childrensmdn.co.uk

> Registered Charity No. 1070533

> Email: pprestonmitonet@...

>

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