Hey guys, I’m 29 and recently diagnosed with loeys Dietz! I had an echo and EKG through my cardiologist. Normal.
Had my MRA of head/neck, pelvis and chest. Also normal. What questions are good for my vascular specialist apppintment. I’m on metoporol. I have a son who’s negative. We’re pursuing IVF for another child to avoid LDS. What should I ask/go over? Any insight is helpful!
Hey guys,
My son gets his results today to see if he inherited this disease from me or not. I’m terrified.
I know it’s 50/50 but I have a gut wrenching feeling he has it and I’ve been praying so hard that it comes back negative.
Good morning.
Yesterday I was cleaning my kitchen I opened my silverware drawer to put some clean dishes away and I noticed mouse dropping in there…. I took everything out, ran it through the dishwasher and cleaned the drawer out with bleach. My roommate got home from work and I told him what happened he said well I caught a mouse the other day and I didn’t wanna tell you (I hate mice lol). So I said okay cool. Hopefully that’s the same problem. Put the silverware back (cleaned into the clean drawer). This morning I woke up and checked the drawer…. More mouse poop. I know I’m not the only one to deal with this, I know it’s not a huge deal but yuck. I wanna burn the house down. It’s August and hot here but with winter coming this problem is probs gonna get worse and I don’t wanna deal with it. I don’t have a choice and we can’t afford an exterminator. My roommate is grabbing snap traps after work and copper mesh. We’re gonna try and figure this out but just words of encouragement please 😎🙃🙂 I HATE MICE.
I was recently diagnosed with Loeys-Dietz syndrome (LDS), a pretty rare genetic condition, and I was literally just diagnosed this past week.
LDS is genetic, and from my understanding, there is a 50/50 chance of passing the altered gene on to a child. The inheritance is random — a child either inherits the normal copy or the altered copy. Quality of life can look different from person to person, but with appropriate monitoring and yearly testing, it can be manageable.
My question is about having another child. If my body is able to safely withstand pregnancy, I’ve started thinking about IVF with genetic testing (PGT). From my understanding, we would create embryos through IVF, test them for the specific genetic variant, and then potentially transfer an embryo that does not have the altered gene.
I have a son who we had by surprise, so this is all very new territory for me. ❤️ I’m sorry if any of my wording is incorrect or offensive — I’m genuinely new to this whole world and just trying to learn.
I have appointments out the wazoo already scheduled, including a prenatal genetic counselor, a fertility consult, and scans to establish a baseline of where my health is right now.
I know my doctors are my primary source of medical information and education, but sometimes it helps so much to talk to people who have actually been through something similar and can explain things without all the medical terminology.
So I’m wondering: Has anyone with Loeys-Dietz syndrome gone through IVF with PGT? Is anyone currently going through the process or considering it? I’d especially love to hear about your experiences with pregnancy, genetic counseling, fertility treatment, or making the decision about whether to have another child.
I know LDS is rare, so it’s unlikely I’ll find someone in my exact situation, but I’d really appreciate hearing your experiences and insight.
Thank you so much for reading my longgggggg post. 🥹❤️
Hi guys,
I’m 29. My mom had emergency open heart surgery last June. She was getting a knee replacement at the age of 55, during her surgical clearance they found a 6cm aneurysm on her aorta. She didn’t meet the criteria for “why”. So they did genetics testing. She has the SMAD3 gene. It was very unexpected. She had no symptoms of this. The cardiologist called it a bomb in her chest. I have an appointment in July to get genetics testing to see if I have the gene as well I’m 29, I have an almost 2 year old and we want more children. I am terrified I have this gene, I’m terrified for what it will look like in the years to come and I’m worried that something is going to happen to me in the time being. Can anyone offer any words of encouragement or support? My family and I aren’t very close and im very scared.
Hi guys,
I’m 29. My mom had emergency open heart surgery last June. She was getting a knee replacement at the age of 55, during her surgical clearance they found a 6cm aneurysm on her aorta. She didn’t meet the criteria for “why”. So they did genetics testing. She has the SMAD3 gene. It was very unexpected. She had no symptoms of this. The cardiologist called it a bomb in her chest. I have an appointment in July to get genetics testing to see if I have the gene as well I’m 29, I have an almost 2 year old and we want more children. I am terrified I have this gene, I’m terrified for what it will look like in the years to come and I’m worried that something is going to happen to me in the time being. Can anyone offer any words of encouragement or support? My family and I aren’t very close and im very scared.
Hey guys!!
I’m 29 I had my first baby in 2024. Prior to that I never really sweat. Ever since I stopped breastfeeding in May of 2025 I have sweat non stop. face scalp and neck. Like it was debilitating. I never left the house bc it’s so bad. I’ve had my thyroid checked, I’ve had my vitamin panel checked, I’ve had my A1c insulin checked. Everything. Everything is normal. This sweating was taking me out. Ive been trying my own remedies since doctors just slapped primary hyperhydrosis on my chart as a diagnosis.
I started taking an electrolyte packet every morning before coffee and the sweating is down about 80%! It’s hot here from march to October so even in 90 degrees I’m not sweating 🥹🥲 I’m so happy! I just wanted to put it out there. Maybe I can help someone else.
TRIGGER WARNING IN CASE.
My now 21-month-old was born at 36 weeks and 5 days via C-section. We had a full 3-day hospital stay, and everything was perfect when we came home. He was healthy, doing well, and there were no concerns.
The very next day, when he was only 4 days old, he became extremely lethargic and felt very cold to the touch. He just wasn’t acting like a normal newborn from what my fiancé and I knew. We took him to Christiana Hospital, where his temperature was only 95 degrees, and he was still extremely lethargic. They ran multiple tests, including a spinal tap, and it came back positive for meningitis. He ended up in Christiana’s NICU and thankfully made a full recovery.
Fast forward to now: every single time he gets sick — a cold, a cough, or like tonight, a 103.2 fever — my entire body goes numb and I am terrified all over again. I know toddlers get sick. I know a fever is not the same thing as meningitis. I know he’s okay. But my mind always goes right back to that tiny 4-day-old baby fighting meningitis, and I can’t shake it.
Tonight he’s asleep in his bed, his fever is down, he’s breathing normally, he’s hydrated — logically I know he’s okay. But emotionally, I feel like I’m reliving that trauma every time he gets sick.
I’ve talked to trauma counselors and tried to work through it, but I still feel this overwhelming fear and panic. I can’t even sleep; I’m just staring at the monitor.
Has anyone else experienced something similar after a traumatic medical experience with their child? I just feel so traumatized by it all.
lol oweeennn.
I love him. He’s my fave. But why does he divorce Cristina and keep sleeping with her. Why did he divorce Amelia and keep sleeping with her. Why does he divorce teddy and keep sleeping with her lol