August 6, 2013 at 11:18 pm #520
Who has EDS and kids that have it too? How do you approach the subject with the pediatrician? I have been to the geneticist for confirmation and now it is time to start on my kids being diagnosed and monitored. Where do I start? Also, who had trouble getting extended family members convinced that they too need to seek medical help. I know for sure that my mother, aunt, and two of my uncles have EDS. I am also pretty sure my cousins have it as well. It is hard feeling like people don’t get how bad it can affect you. Even if they are okay right now, it might not stay that way.August 8, 2013 at 9:38 am #4072
Hi, I don’t think I’m going to have that problem with my family (children and siblings)! They are amazed at my strange and many health issues over the years and especially during the last 18 months when POTS symptoms came on. They do not want my life! They’re scared to have anything I get diagnosed with and I’m sure they’ll jump at the chance to have their own health investigated to rule out any of the same diagnosis’.
My kids are adults now but still top priority for me! I don’t take them to doctors anymore (!) but they are keenly aware of what’s going on with me and how it may in time affect them as well. They, along with my hubby, are my very supportive partners during this mysterious health journey.
Today I received my 23andME gene kit and am eager to get that sent away for analysis. It will be good to know which disorders I may be susceptible to which in turn might be passed on to my kids.August 23, 2013 at 10:56 pm #4189
Did you do the 23ME test yet? What do you think about it?
ShondaAugust 24, 2013 at 3:21 pm #4194
Hi Shondra. Yes I just had the 23andMe gene kit picked up for analysis a few days ago! Other than saying there were some glitches with international shipping (all got worked out), I don’t have an opinion yet on how I feel about the testing.
Hoping it will provide some insight into what might be going on with my health and of course, hoping to learn if there are genetic disorders my children should be made aware of.September 5, 2013 at 11:13 am #4278
Do you have your results back? I am curious if you think it is worth the cost? I saw my geneticist and I have the classical form of EDS, but I like most, lack the marker. I was really thinking I would have it since there is such a clear inheritance in my family, and the genetictist said I was a perfect textbook case of the classical form. Plus my skin biopsy was positive. I hope eventually they’ll have all the genes isolated for EDS in all the types.
ShondaSeptember 5, 2013 at 10:39 pm #4292
Ya it’s strange you weren’t in the 50% of classical EDS’ers that have the marker seeing as you know their are others in your family with it. I don’t know of anyone in my family, perhaps my mom. Agreed.. it will be nice once markers are discovered for all eds and also for other mysterious/invisible illnesses.
23andMe- All in all, it was interesting but not sure how valuable it will be yet. I’ve only just looked it over this evening. It’s quite a lot of material to read!
There are 23 disorders that I have an increased risk of getting. I have no idea if that’s unusual or not but some of them aren’t very nice. It also shows that I have a decreased risk of getting 38 others that are listed. Then I have average odds of getting the rest of the disorders they list. They ‘locked’ Alzheimers and Parkinsons as they want you to be sure you want to see those results. Clicking a button will bring me those results but I’ve not done so yet!September 6, 2013 at 4:04 pm #4301
Interesting that they lock the Parkinson and Alzheimer’s results. That is what most people want to know. Plus I thought Parkinson’s was not a disease with a clear inheritance pattern. Do you think it was worth the time and money?
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