It is absolutely fantastic that you are rounding up support and working out ways to get to an expert. :terrific:
Now all we want is to get you to a real one!
Please really do your research in locating a real scleroderma expert. MANY doctors claim to be scleroderma experts, or are referred to as scleroderma experts by other patients, who simply are not experts, they are more like wanna-be's or maybe even the best option, considering the dire lack of expertise in their area or state.
There are only a few dozen scleroderma experts in the U.S. If you are finding a lot of them in your area, unless you are on the East Coast of the U.S., that is very suspicious. It is likely you are finding doctors who are interested in scleroderma, or those who just clicked the box for scleroderma when setting up their online profile, in hopes of attracting almost any new arthritis patient.
Many years ago there was a scleroderma expert I heard about. Nobody was better in town, maybe even in the state, people said! You know what? He was indeed an illustrious doctor, in many regards. But on being asked about this more closely, it turned out he had only treated ONE scleroderma patient, ever, in his entire long career, and she had died of it.
The whole ordeal was very upsetting to him and he was determined not to take any more scleroderma patients. He would still examine new patients who were suspected to have scleroderma, but only in hope that they had something else instead, which he could help with. If he decided they really did have scleroderma, he would tell them straight out that he'd only treated one scleroderma patient ever, that she died of it, and he could not be of any help to them. Despite this, the aura of "scleroderma expert" still hung on him!
We all want you to have better care, and a better experience, than that.
Of course, that was many years ago. Since then, scleroderma has become more understood and much better managed BY SCLERODERMA EXPERTS and our tremendous scleroderma community has been able to network together worldwide, the physicians and patients and caregivers alongside each other.
However, your usual local rheumatologists, no matter how absolutely fantastic they are with other rheumatic and even very similar diseases, such as lupus and rheumatoid arthritis -- and no matter how fabulous their bedside manner -- typically see only a single case of scleroderma in their entire career. And there are many different types of scleroderma. Because scleroderma is so rare, doctors need to take a profound interest in scleroderma in order to attract enough of them to eventually become an expert.
And even if a doctor is listed through major scleroderma organizations as being an expert, you should still examine their credentials and ask questions. How many years, how many patients, where did they study, because there are scleroderma experts and then there are world class scleroderma experts. Even among the very finest, our most amazing and treasured researchers of all, you might still encounter someone with poor communication skills, or that you just don't relate to well, so it is not unusual for scleroderma patients to end up consulting even several of the very top experts before they find the best fit. See ISN Guide to Scleroderma Experts.
Your GP sounds absolutely priceless. You tell her she deserves and award from us for taking the time and compassion to research scleroderma for you. I'm giving her our first ever Outstanding Scleroderma Primary Care Doctor Award. :great: