Morphea
Caroline Lancaster has a medically significant health problem consisting of localized Scleroderma (Morphea) of the skin of the right arm and hand. Because of the potential serious nature of this condition she must go to Oschner clinic every six weeks for treatment. It is of the utmost medical importance that she be allowed to do this. Sincerely, B. Fred Bodie, M. D. Dated July 31,1995.
Words can not fully convey the extent to which this disease can ravage the body. Within eight months of this letter the disease had spread to her back and legs. Left unchecked, which is at present a medical impossibility. The severe leathering across joints will leave the member immobile. A number of medications help some people, but not all people all of the time. At best any one medication has a thirty percent probability of arresting the disease at a present location. You, our traveler, can not visualize the prospect of a wee little girl with tears are as large as her small face. We pray with all of our strength to bear that you will not endure such an illness.
A Link
As you will recall, a link is a tool which has been given by The Keeper. We searched to no avail, the WWW for anything on Morphea. Only a few articles were found after literally days of searching by all of our family. Within one week of Caroline's diagnosis, we received an e-mail asking if we wanted to test a new search engine which was in the early beta testing environment. Web Compass was that tool and within days, as we worked on our computers, leaving this Gift to search in the background, more than one hundred items were found. These in turn were grouped according to relevance, source, and date. Four e-mail citations were found. One from a doctor in California to a doctor in Greece. A second from a doctor in Argentina to a doctor to Nepal. A third from a doctor in Arkansas to a doctor in China. And the fourth was from a doctor in Birmingham, Alabama to a doctor in Switzerland. We were amazed to find that in each of the four e-mails the same medication was mentioned. Caroline's eye's sparkled with hope when I called to tell her to news. She immediately called Dr. Bodie, picked up copies of the e-mail, and rushed to his office. After conferring with all four doctors, the medication was given to Caroline. We wish that we could say that the medication cured the disease. It did not, but apparently slowed down it's ugly spread - (what works for Caroline, may not work for you).
One will not doubt after an experience like this that Faerie's do exist, as if there was any doubt on my part in the first place.
Caroline's E-Mail Address
Our daughter will be happy to help any who would but ask. You may contact her by clicking the image shown below.
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The response to Caroline's section on Morphea has amazed her, but quite frankly not myself, because I know how difficult is the task of finding treatment regimens for slowing the spread of Morphea. There are no magic bullets. Perhaps by posting the treatments of those who give permission, we can at least give some hope and alternative treatments - realizing that what may work for some people will not work for all people.
Responses With Permissions
My name is Niki Roberts and I have a rare and advanced case of Generalized Morphea. My> Doctor is Kim Abson. She is an Assistant Professor of Dermatology at the University of Washington (UW), in Seattle, Washington. She also has a private practice at the Polyclinic in Seattle, Washington.
Kim saw me during Grand Rounds at the UW and thought my condition looked very similar to another condition she was working on at the Fred Hutchinson Cancer Center. Her patients at Fred Hutchinson had bone marrow transplants and suffered from what they call Graft Vs Host disorder. She was conducting FDA clinical trials with the drug Thalidomide and wanted to do a similar study on my condition.
I have been on Thalidomide for over a year at a variety of dosages ranging up to 1000mg per day. The drug has been successful in softening my skin and giving some mobility back to my hands and feet. I am temporarily in a wheel chair and look forward to the day I can leave it forever.
In addition to the Thalidomide, Mega doses of vitamin D3 (Rocatrol) have been added to help with additional softening. I am currently on .75mcg.
One last drug that is being used to help with some of my skin infections is Dapsone, 75mg per day.
Hopefully you have been cured and don't need this information. Feel free to share it with others and let me know how you are doing, your friend Niki.
Treatment Updates
Caroline went to see my dermatologist, Dr Soni prior to graduation and going to New York. He recommended that she try PUVA treatment with a clinic on the eastern shore near Mobile, Alabama and pursued the recommendation in New York City. To quote Caroline, "After the second treatment I can see an actual diminishing of the spots and leathering affect." For more information about PUVA treatment see the New Zealand DermNet.
