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