Hello Lab-Scientist-Lady!
I suspect that my mom has EDS. She has really soft skin, wide paper scarring, was ‘clumsy’ a lot (was the ‘clumsy’ one among her siblings), & a lot gastrointestinal issues & what I suspect are autonomic issues. I think I remember a picture of her when she was younger & her knees looked like they were hyperextending even though she was simply standing. She also has some resistance to pain meds like I do. I mainly have to go on my own observations & memories because trying to get a straight answer out of her is almost impossible & she doesn’t talk to her family much. She has 6 brothers & sisters & I have no idea if any of them could have symptoms or not. I’ve told my mom about all of this and she blows it off. Her parents died when I was young and I don’t remember meeting them. All I know about them is that my grandmother had uterine cancer that had metastasized everywhere and my grandfather had more than one heart attack in his life. A heart attack is ultimately what took him just a few months after my grandmother passed. They were both 67 I believe.
I got a hand tremor from my dad and he has Terry’s nails like I do. He also has worsening anxiety to the point of beginning to have attacks starting in his 50s. I know his feet have felt numb for a few years. He’s never asked a doctor about it so no helpful info there. He also had a tendon rupture or whatever it is when the bicep becomes separated from the arm at the elbow. He has had a couple surgeries on it and still has a lot of pain. He injured his knee when he was in his teens and eventually had surgery because there was no cartilage left. Like my mom, he also does not have much contact with family so I have no idea what other symptoms might be floating around there. I believe both of my parents suffer from Depression and I think my mom may have some other mental issue going on but I don’t know what it is. I only met my dad’s dad once when he was on his deathbed and I only saw his mom a few times. I’m not sure what ages they were when they passed away almost 20 years ago. I know my grandfather died from complications from AIDS I believe and I think my grandmother had all kinds of stuff going on. I think there was emphysema and some other lung thing and I want to say another condition or two but I have no idea.
My family and I don’t talk much. I have texted here and there with my mom but I haven’t seen my parents in almost 3 years. And that was only because my husband’s grandfather died and we were attending his funeral. Since our families are from roughly the same area, I have to also do a courtesy visit with my parents to avoid any issues from not seeing them. So getting any info let alone a detailed history is probably not in the cards for me. Oh well.
I have an older brother and a younger brother who both have some health stuff going on. My older brother was born with a Ventricular Septal Defect so he has a hole in between the ventricles in his heart. If you listen to his heart, you don’t hear a “thump thump” and instead hear the sound of a half-empty water bottle, held sideways, sloshing back and forth. He also has pretty strong asthma and is allergic to soooo many things. He has issues with temperature change, his hands can become extremely swollen in the cold, and he wants to be in the cold all the time. Everything feels too hot to him. He had horrific “growing pain” in his legs that would cause him to scream and cry at night. He has stretch marks from growing like I do and I believe he also has some sort of gastrointestinal issues. He mainly seems to deal with flatulence that is like something died in him. He had a nasty case of Bursitis. The lump on his elbow was huge and the bruise covered the entire inner upper arm. I’m not sure if he has any hypermobility. Like my parents, he doesn’t really give straight answers so I can’t pinpoint exactly what is going on and can only rely on what I have observed.
My little brother seems to be the most like me. He has terrible joint pain and very obvious gastrointestinal issues. To the point where even one bite of ham or bacon will put him in the fetal position on the floor. He has a curve in his spine that is supposedly just millimeters shy of being official scoliosis so I just say he has scoliosis. He has terrible lower back pain like I do. He and I both get these odd little patches on our skin where everything looks normal but it becomes extremely over-sensitive and painful to the touch. It eventually just fades away on its own. He apparently asked a bunch of his friends and they had no idea what he was talking about. He asked me and even said “Oh dear god, please tell me you know what I’m talking about.” I’m one of the few people who has ever understood much of what he deals with. I’m not sure if he is hypermobile. He has ADD-like symptoms and I found Dr. Driscoll’s video about mental issues very interesting because she mentioned Bipolar presentation. I have been worried about my brother for several years because he has shown self-destructive behavior, has attempted suicide more than once, seems to have mania stages where “everything is wonderful and he wants to do this thing and that thing and it will all be great” and then he will have depressive stages where everything is awful, life isn’t worth living, etc. He took a bunch of pills last year and was brought to the hospital. The docs gave him charcoal stuff to absorb it, talked to him for no more than an hour and sent him on his way. He had seizures while on the bed and acted like nothing had happened at all when he woke up. Just popped up and was ready to go back home and didn’t understand why anyone would be upset. He has had terrible dehydration that caused his body to lock up & his hands looked like claws. Earlier this year where he was blacking out & falling in public. He was supposed to have a TTT but just ignored it. He said the saline IV he was on in the hospital was the best he has ever felt.