Hi JenB,
Amen! I can believe how much other zebras understand each other. I have already lost friends because they don’t understand why I can go do things. You definitely have EDS. I think I would even tell the gastro doctor that on Monday. Say you are waiting on seeing the Geneticist to learn your type. That way they don’t dismiss you. Say you have been clinically diagnosed. I did that so I could see cardiologist and have him order the correct test to check my aortic root. BTW you need to see a cardiologist too. Do you know which of your parents have EDS? Do your brothers have signs of it too? For me it is my mom and her parents. I actually think both her mom and dad had EDS. All her brothers and her sister have it. I am trying to convince everyone in the family to go get checked out. My grandpa had a AAA, and his mother, and several siblings died suddenly. Grandmother also had severely sibling die suddenly and others lived forever. I really think if one person has EDS then every one has it. All it takes is one copy of the gene. The severity ranges from one person to the next, and it appears that men are less bother by it than women. I wonder if it is because their muscles are stronger and that helps keep their joints more stable. I have the Classical form of EDS. I currently score a 7 out of 9 on the Beighton scale. I may have been a nine at one time, but I have arthritis bad in all my joints. My kids all show signs and I am going to get them in next for testing. I am waiting on my test for the vascular form to come back. My mom has made her appointment with a cardiologist. I don’t have any siblings.
I live in the Dallas Forth Worth Area. Growing up I lived in Colorado, Wyoming, Oklahoma twice, Louisiana, Michigan, and Texas twice. My Dad worked for a company that was always moving people around. Do your cats bother you? I know you said if your cats scratch you you break out. I have one and I have had life long allergy problems and all the dysautonomia problems. I had her completely declawed so she could not inculcate me. It helps as long as I don’t scratch myself or have any breaks in my skin. She has even started sleeping in our bed, which until recently was off limits. She just knows not to get up in to my face. She is a great comfort to me. I’ve had three surgeries this year and she has watched over me. She would lay next to me and follow me every where to make sure I was fine. We also have a dog, a yorkie poo, 2 guinea pigs, and fish. I have problems with all the animals, but I thought having them would help be react less and I hope will do the same for our kids. Growing up I always had a lot of pets and as time went on I started reacting to them. I have learned that females are less allergic than males, even though the dog is male, and they all get regular baths.
Shonda