Volume 16, No. 3, Summer 2008
(EDITOR’S NOTE: When I first received the following letter, my first action, as with all unsolicited material, was to call Ms. Douglas to ascertain her identity. Second, I passed it on to a local physician—whom I’m keeping anonymous for obvious reasons—to check if it referred to actual medical conditions. The paraphrased response: “PXE is a very rare and esoteric condition of very little interest to anyone who doesn’t have it. I have the same reaction to the sarcoid information. I don’t think they would be compelling to most of your readers.”*
[However, we are still running the hand-written letter from Ms. Douglas because I believe it illustrates another heart-rending issue that transcends her particular “esoteric” medical issues. That is the loneliness of those suffering from what might be described as Orphan Diseases. In some cases it might be the frustration of obtaining a proper diagnosis, or finding the right specialist. There are no telethons to raise money for research into a cure or prevention. And nobody around to share your burden. How do you form a support group of two people?]
To the Editor:
As I was going through my mail the other day, I came across your newsletter, To Your Good Health, so I am going to begin by sending you this information. First, let me introduce myself. My name is Kim. (No, it is not short for Kimberly.) I am only one of two people on Cape Cod that has this rare disorder. The other person (a woman) lives in Provincetown. I would like to bring this out more. I was diagnosed with PXE at Mass General Hospital in 1978. Please excuse my writing mistakes, as the PXE has affected them both (my eyes).
I would be very grateful if you would consider doing a story on PXE.
You could also go on the computer at www.pxe.org.
Please respond.
Kim Douglas
Hyannis
P.S. I am also sending you some information about “sarcoidosis,” which is another disorder I have, just to name two.
* According to PXE International, “pseudoxanthoma elasticum is a heterogeneous (incurable) inherited disorder of connective tissue…One of the body systems affected is the eye. A person with PXE rarely, if ever, becomes blind (but) they can lose enough central vision to become legally blind. PXE (also can) affect the skin, heart, vascular and gastrointestinal systems.” The American Lung Association describes sarcoidosis as “a medical mystery” that is not contagious and also often asymptomatic. It’s most frequently found in the lungs and can disappear on its own with the patient not ever knowing they have it…or it can be “a very serious illness—even fatal.”
To the Editor:
RE: Reply to article, Spring 2008, by Senator Rob O’Leary.
Senator Rob O’Leary states that more can be done in the area of medical malpractice reform.
He should know that there is a cap on damages in medical malpractice cases. Also, the Court for the medical profession has a medical tribunal procedure to determine if a claim is one of merit or not.
Why not look into the professional liability premiums paid by those physicians associated with the Harvard Risk Group vs. other liability carriers? Why not look at the return on investments by all professional medical liability carriers in this state? Why is it necessary that certain medical liability carriers refuse to settle a medical malpractice claim until the hour of trial? Said company keeps the money invested while the injured patient most often has suffered serious financial harm.
Yes, we do have an adversarial tort system because of the failure of both professional groups to address critical issues in resolving the liability issue. Reform will come only when physicians and trial lawyers accept the Jewish folk saying, “Justice delayed is worse than injustice.”
Sincerely,
Philip F, Mulvey, Jr., PhD., J.D.
Trial Lawyer
Easy Falmouth
To the Editor:
I just wanted to thank you so much for the fine article that you wrote about our program in To Your Good Health. We have such an amazing program here, and it’s always great to get the word out.
Incidentally, we’re very proud of our Local Fest fund-raiser and those who participated in the Hyannis event will be glad to know that all the money raised goes directly to benefit our members and strengthen our daily work program.
Again, thank you for your belief in the program.
Desha Abe
Employment Coordinator
Baybridge Clubhouse
To the Editor:
I just came across the article about the opportunity to have mini-clinics in CVS pharmacies in Massachusetts. I'm a proponent of moving forward with these facilities. There are so many reasons for people to support such facilities:
* Availability: They provide walk-in services via longer hours and shorter waits for busy persons who can't wait to get through to their primary physicians in a timely manner and they provide service to those who are not covered by health insurance and/or those visiting an area.
I can attest to the fact that they are a valuable asset in the medical field because I recently took advantage of a CVS Mini-Clinic in Raleigh, N.C.
Early one Thursday evening I realized I had some sort of skin problem erupting on my face, spreading near my eye. I got in my car and drove to the nearest CVS clinic. The nurse saw me immediately, allayed my fears and accompanied me to the over-the-counter display of skin creams and pointed out her recommended remedy. She didn't finish registering me so there was no cost once she realized it was a form of dermatitis.
By Monday the dermatitis had spread elsewhere on my body so I stopped back at the mini-clinic where I related the situation to a second nurse practitioner; she suggested a slightly different medication. She didn't register me either. This wouldn't have happened at my doctor's office; it would have taken several days to get an appointment; and I would have spent hours waiting to be processed.
In North Carolina, pharmacies have been offering other services such as screening for cholesterol, diabetes, etc., at very reasonable costs. We need open minds (as we) continue looking for alternative ways of addressing health issues that can be delivered readily to a population in need of care in a safe, high quality manner yet reasonably priced.
Margaret L. Karker
South Orlean