Hello Dazzle! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I wanted to shed a little light on the research being done at the Norris Lab. This lab has “identified a strong candidate for hEDS and generated a genetically accurate mouse model to study the disease.” This means that they are working hard to find the genetic markers associated with the hypermobile type of Elhers Danlos Syndrome.
This research is exciting. Knowing the genetics that are involved would likely create an easier avenue for diagnosis for those that have hEDS. Understanding the genetics might also shed light on options for treatment and may eventually lead to a cure. This is a very important first step to improving the quality of care that we are receiving.
The first thing that makes me excited about this particular lab is that the research is being done by a scientist that has hEDS. This means that they are as invested in this research as a person can possibly get. They aren’t going to just give up on it or walk away if things get tough or the results are confusing. It also means that this is someone that is looking to really create change. They are looking for more then just the genes. They are looking for real answers with the goal of having a real impact in the quality of life indicators for those of us that have hEDS.
The lab has a patient registry. If you have been diagnosed with hEDS, you can go to their web site and complete their online survey. If you meet the inclusion criteria for their research, they will contact you for a sample of your DNA. Keep in mind that this is a small lab with a small team. This means that it will be a long wait before you hear back from them. Be patient. They are doing everything as quickly as they can, but every step in the process takes time to complete. They have been getting many applications and they will need many more.
So, if you’re interested in learning more about this lab and the research they are doing on hEDS, follow the link above. It will take you to their page that talks about their hEDS research project, including where to apply if you’d like to donate DNA. Keep in mind that it is essential that they have people donating their DNA if they are going to be able to discover the genes that can improve the quality of care that we are receiving. If you have a diagnosis of hEDS, please consider donating your DNA.
Well, that’s about it for my rambling today. Thanks for coming and spending some time with me. If you like what you read, click on that like button. It really does help! Until we talk again, you take care of yourselves!
Zebra Pig 