My partner has celiac disease. You may have heard of it recently; it's been in the news more and more often. 15 years ago, the medical community thought that it occurred in 1 in 5000 people. 8 years or so ago, they thought it was 1 in 3000. Now they know it is 1 in 125 or so in the US and Europe. It's an autoimmune disorder that affects absoption in the intestines; people who have it can't eat gluten, a protein found in wheat, barley and rye, or they become unable to absorb the nutrients in their food. The symptoms are extremely varied, so cases don't always present the same and are often confused for IBS, iron deficiency, neurological disorders, etc.
So, what does this have to do with RLS? Well, first, the medical community has severely underdiagnosed and misdiagnosed it, and, second, the people who have it have decided to fight for recognition. And they are succeeding. RLS is also severly underdiagnosed and mistreated. And I think we will succeed, too.
I belong to a celiac message board that has over 10,000 members! These people never stop in their fight to get celiac disease recognized and to push for new diagnostic tests and possible treatments. They continually bombard manufacturers with questions about products and labeling. They lobby Congress to change food labeling laws. They have put a face on celiac disease. They meet in local meetings and online, they educate each other, the public and non-celiac family members.
The people on this board and those who participated in the surveys are doing the same thing that those celiacs have done. Celiacs have stopped accepting poor doctors, just as we are doing. Celiacs have demanded that they get the attention that they need and deserve. We are starting to do that, too. In some of our posts, we talk about "firing" our doctors. We need to continue to do that, while educating them at the same time. The only way we will get anything more is to create what we do want.
I'm using those celiacs as my role model
. A few years ago, Kraft was unable to tell a caller if some of their products had gluten. Thanks to those active celiacs that refused to accept things the way they were, now Kraft has a policy that it will label ALL PRODUCTS if they contain major allergens. We can safely buy food in a way we could not do before.
Here's to the same happening for us. Here's to all of us here that participate, educate ourselves and others, refuse to let our doctors intimidate us and/or provide us with outdated or inferior treatment, and continue to push for this to be recognized as the serious condition that it is.