Re: Letter Writing

From: vicki (nailbox@netzero.net)
Mon Mar 9 20:26:34 2009


Wow! I feel truly blessed to have someone like you and this forum in my corner with youre knowledge. Thaks vicki At Mon, 9 Mar 2009, jetstamp wrote: >
>I wrote a couple more letters today, one to CNN and one to the local
>health reporter at a local TV station. Here is what I'm trying to fit
>into these letters:
>
>1. Brief as possible description of what adhesions are, some of the
>things that may cause them (injury, surgery, endo-which is often
>undiagnosed, anything that causes inflammation.)
>
>2. Attitudes encountered from the medical community when attempting to
>seek help- their refusal to acknowledge adhesions or the problems they
>can cause, subsequently denying the patient appropriate diagnostic and
>treatment measures. Also, some of the lame, vague unhelpful catch-all
>terms used to explain/dismiss the multitude of symptoms and pain, such
>as IBS, Pelvic Floor Dysfunction, Depression, uterine fibroids.
>
>3. Explain that diagnostic measures are not offered because currently
>in the U.S. the only means to do this seems to be laparoscopically-
>even though in 'some' cases a simple abdominal exam should be sufficient
>but apparently it isn't.
>Also, explain the fMRI that has been available in Europe but apparently
>not in the U.S.
>
>3. Explain how adhesiology is not offered (that is of course IF you're
>lucky enough to find a physician who is even willing to admit adhesions
>exist in you or can cause the problems you have). Explain why it is not
>offered- which is because adhesions may reform.
>
>4. Explain the 'Second-Look Laparoscopy' procedure being used by a
>'few' innovative physicians. This is where, after adhesiology, they go
>back in in a week or so to check for new adhesions. If there are any,
>they are softer and easier to remove than the original ones, therefore
>removing them causes less damage and sometimes this is sufficient to
>prevent any additional adhesions. Suggest that this be standard
>operating procedure when adhesiolysis is performed.
>
>5. Give as brief as possible a description as to how adhesions relate
>to you, and the overall, general experience you have had with the
>medical community. Mention anything major this has caused in your life-
>like if you have lost a job or a relationship due to this.
>
>6. Mention this site- IAS (International Adhesion Society- spelled out
>as well) and mention that you have a lot of company!
>
>7. Mention Karen Steward's 2007 book- 'Doctors: Bound by Secrecy,
>Victims: Bound by Pain'. If you have read it, give a brief description
>of the book and state how well you could relate to the hostile,
>indifferent attitude of the medical community. I always end my letter
>stating that the story has a happy ending- but it required going to a
>doctor in Germany!
>
>Also, if you refer to Adhesion Related Disorders, be sure to spell it
>out. As I mentioned in a previous post, if you google ARDS, a condition
>called 'Acute Respiratory Disease Syndrome' shows up.
>
>I am constantly trying to think of magazines, TV stations, and TV shows
>to write to. Sometimes they limit the number of characters in the
>letter so you can't get everything in, but I was not limited on the CNN
>site or my local TV station's.
>
>If anybody has any suggestions as to whether anything I've not covered
>should be included, please post a reply. I did read that link that was
>posted today about the deaths related to adhesions so we'll have to
>consider adding that when possible/practical.
>
>Joan

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