What is Triple X Syndrome in Adults?
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- Опубликовано: 22 янв 2020
- This video explains Triple X syndrome in adults. Unfortunately there doesn't seem to be enough research around this condition as we become adults, but there are a few facebook groups where people share their stories. The one I was mentioning in the video at 14k, I think I was confused with an autism group's numbers, so sorry about that!
Hopefully these facebook groups will help you out: / triplexsyndrome
/ 210215839325788
This PDF by Royal Berkshire goes into detail on Triple X and the conditions it can cause: www.royalberkshire.nhs.uk/pat...
I'd love to do a study on the links of Triple X syndrome in adults and the conditions they have due to this, but not sure where to start. I may write a survey!
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Hi Sarah
We just discovered my 26 yo daughter has Triple X. She is pregnant and initially they said it was the baby, but then determined it was my daughter. This diagnosis makes so much sense about her struggles as a young child and adolescent. I came searching in hopes to find support for her as she feels like she’s suddenly defective or broken. The diagnosis came as a real shock to me as her mother because we, like many other families, went undiagnosed all this time. Fortunately she hasn’t experienced any major medical issues up to this point in her life. God willing, she doesn’t experience anything major going forward. Thank you for sharing your experience and bringing awareness to this issue.
I’m now turning 44 years old and recently got tested for learning disability only to find out I have triple X which has made things worse emotionally but finally an understanding of what’s been going wrong all my life. ❤️
I was diagnosed with triple X in 2012. But it has now taken a hold of my life and there's not really anything on it. Thank you for bringing attention to it. It has helped my boyfriend understand that I can't control myself that there's something out of my control.
I have some of the symptoms you mentioned and throughout my life I felt an outsider and now as I try to live my life I understand I'm different that makes me unique.
I just came here from my biology book.Thanks for informing us firstly and secondly I am sorry that you guys have to go through all of this.I hope this condition will start to get recognized more medically.Stay strong
I just came across the video when I was actually studing about the syndrome in my biology book.U r so strong and I'm proud of you.
Research skills are CRITICAL to learning, so you are way ahead of most people. Don't give up Sarah. You're very good in this video, too. My niece has trisomy X - she is also tall and beautiful.
Wow I would have never known about this.. It’s amazing that you’re opening up and bringing awareness to this💖
Thank you for sharing
Hi, you continue ? We are in same situation...
My 15 year old has Tri-X, she’s such a sweet and loving girl but as she gets older she’s experienced more issues. Sadly doctors know little and have little help to offer. Currently she has anxiety and depression, and some learning difficulties. My daughter shows signs of being on the autism spectrum, but the doctor we saw would not diagnose her. This doctor said “ her behavior is due to her Tri-somy”. True! doctors are ignorant and don’t seem to care. So we try to get by one day at a time. Blessings to you and other girls with Tri-somy
That doctor sounds really dumb because autism and other lds can be a result of triple X. Can you try to take her to another? ): Hope you’re both doing well.
Thank you so much, lots of happiness for your present and future ❤️
I am a medical student . I admire you for opening up thank you for telling me how you feel.
I’m happy to find someone else has this
I have it too. Diagnosed before I was born through amniotic test. As you said there is so little research as it's pretty rare, it's nice in the sense to know there is someone out there who knows what it's like. Thanks for making the video.
I have triple x my parents told me when I was around 10 and I couldn’t relate to anyone more then I can with you❤️
I have it too. I thought I was odd.
My daughter has triple x. She's 19 months now. Can't walk yet, hasn't said any words yet. She is progressing every month, so we're not too worried. But so far she does seem to be behind on some things. I just want her to live a fulfilled and happy life.
Lots and lots of parents worry about their children so you're not alone!
She will be fine mama. Take it one day at a day. I have it. I was diagnosed last year due to reoccurring miscarriages. I live a normal life, have 2 kids and hold a master's degree in business. The main problem I have is WPW, a heart condition I was born with and it doesn't stop me from living my life to the fullest. Hugs to you mama. I know people are affected diffirently but your baby will fine ❤❤
Thank you very much for sharing your story! I wonder despite all your struggles with your health, are there any strengths that you have, like something you really like doing and you can do well?
You are not alone ❤️
Well, you're awesome. I hope the bladder will settle down. Chin up, you're doing great!
I had never heard of this before. Thank you for sharing.
Woo an educational video! Thanks for watching :)
If I could like this video a 1,000 times I would. I was diagnosed with trisomy 23 back when my mom was still pregnant with me, 23 years ago. I was part of tests and research at a local research university hospital for most of my elementary and middle school years. Did speech therapy for 3 years (ages 4-7) and didn't and possibly don't have any other disabilities or difficulties.
However this past year and a half, I have noticed some things that are quite off, things that make me think I could possible have ADHD/ADD or be somewhere on the autism spectrum. Theres a possibility I could have just adapted really well and my difficulties went unnoticed.
I would like to talk to a professional one day and see if I need a referral, but im under a lot of pressure atm, getting my B.A. and applying to the teacher's credential program. So I'm doing the best that I can with the information I have. Thank you for making this video!!
Wow what an opportunity to be part of research though!! Gosh I heard women seem to adapt and get on really well in school so it's not found! I'm still waiting for the ADHD test haha. Are you on Instagram? Would love to chat! @little_distractions is me on there! I wish you luck with your BA! At least triple X isn't stopping us go to university and study like everyone else! I wish I could go back to uni tbh, was the best part of my life.
We were just told my daughter (18 yrs old) has trisomy x. Reason doctors pushed for testing is her cognitive decline and toes turning almost black when she stands or sits. She is smaller in stature and never went through a growth spurt until she was 16, has had speech and low muscle tone so received speech, PT, and OT in elementary. She started cycling at 10. She gets her cycle every 19 days. She has been labeled as Intellectually disabled w/anxiety but no other known issues (dyslexia/adhd/autism). Her doctors never did further testing. She was very sick from 1 yr old until 3. She was a little delayed from her older siblings but nothing that would have made anyone concerned from birth until 3. Actually she was only a month behind her older siblings. We always thought it was vaccine injury because she couldn’t receive her 12 month vaccine until she was 3 yrs old. She was on antibiotics for an entire year because she developed juvenile asthma at 1 yr then we spent every cold in the hospital because it turned into pneumonia. Doctors put her on amoxicillin from 2 yrs old until 3 then said she was good to go for her 12 month shots. As of now, her reading level is at a kindergartner.
You are a great fighter.❤️ Love you. You'll prosper in life ❤️❤️❤️❤️❤️❤️
Finally you responded. This is a great gift for me.❤️❤️
I don’t have all of the issues, I’m borderline which I’m grateful so I keep encouraging myself as much as I can to improve even if there’s no cure.
You are good person thanks to sharing i læring more thinks❤
Thanks!
you are awesome girl
YESS GIRL! My name Bailey, i'm 23 years old
I was born with an rare heart defect called tetralogy of fallot and when I was three years old I got diagnosed with triple x syndrome and when I was fourteen I had a stoke which cause me to have a brain condition as well, Yay me! I had a delayed development of speech and language skills. Math is not my subject. I have anxiety and I have trouble picking up on people body language and bladder issues. I also couldn't be on a certain type of birth control I just stopped taking it all together. But I agree they should do more research on it so we as adults can have more clarity.
Oh wow! Hi Bailey! Crazy to hear you got diagnosed with triple x when you were 14! I'm sorry to hear about your issues but sounds lucky you are alive! Try to cherish everyday. Thanks for sharing! Would love to talk to you on Instagram! If you're on it I'm @rosegoldsarah
Little Distractions I followed you 💕 my Instagram is baykhao.
I was born with triple x syndrome. I got more of the learning difficulties and it takes me a longer time to understand things. I do suffer with anxiety and depression but I am able to control it. But I've been diagnosed with fibromyalgia, rheumatoid arthritis and a lot of other things. But there isn't any research on it so a lot of people don't understand this type of syndrome, I have kept it to myself for years but at 28 I have been able to open up about it more but if you'd like to message me and talk more about our similar issues I am more than willing to explain what I do and how I deal with it everyday and it's cool to meet other girls who have it and can support each other.
Gosh it's so strange how I'm reading the comments and we all have the same issues yet there's no research done!! Perhaps triple X is too new for all these doctors and consultants and they see that there's no evidence to show it causes something really bad like cancer, so they don't bother to research the condition. It's sad. Also I used to keep it bottled in because literally no one knows what it is. Even some basic doctors don't know what it is, when I went public with it here and on my Instagram (because I run another RUclips channel for ASMR) people were shocked and had no idea what it was. I am happy that I'm not alone and wish more people with triple X would speak up but soooooo many have got it but not been diagnosed! Thank you for reaching out and I'd definitely love to talk to you about it. I'm @little_distractions on Instagram if you have Instagram! 🤗
@@sarahslittlechats2493 I will definitely add ya on Instagram. 😊
How do you control your anxiety and depression? Anything can help.
I think I may have this. How do I know? And how do I approach my health care professional with this?
I was diagnosed when I was a baby with it. I have the trait of long legs and some of the other stuff. The learning disability that flows witch it’s tons of fun, learning to under people and having slight autism as well
This sounds similar to Fragile-X, but Fragile-X effects males, too. Also, it seems XXX is more common than Fragile-X. But Fragile-X is easier to Google without getting porn thumbnails. Sheesh. Now I have to parse all my Google histories.
I'm wondering if a fibromyalgia diagnosis should be renamed "X Chromosome myalgia" or XCM. FX has fibromyalgia, too. And ovary issues, developmental delay, etc. But we get the big ears. I guess I could say "I have the earmarks of Fragile-X". 🙂
Thank you for sharing. I'm female, also. I watched this looking for a differential diagnosis of Fragile-X.
Hey what's the name of the fb page plz
Hi, I was diagnosed with 47XXX couple of years ago. I’m 36 this year. There’s a lack of understanding of this in Australia. I feel like My doctors, just have not much idea, as they said “that is very uncommon!!” - caused infertility too and premature menopause. For the last 3-4 years, I have been dealing with health issues..... I’ve tried several different brands of HRT, but all has caused me infections . So nothing is working .... feels like I’m dealing with daily struggles.
oh gosh I am so sorry to hear! I'm here for you if you wanna chat! my instagram is @rosegoldsarah, just send me a message so I know it's you :). I've just started my HRT patches - yesterday so I don't have much knowledge of it yet. Sorry to hear about your doctors too, such a shame there isn't much understanding - especially in adults, wish there was a way to help more.
Thanks for sharing! You’re a beautiful girl 💓
My granddaughter has triple x she is 13 now and has tremor's that effects her hands and voice. She has heart problems and recently had a seizure and as you mentioned she also is intellectually disabled. It is horrible. The doctors know little about it which is so frustrating. Good luck to you and thank you for sharing.
I'm so sorry to hear! It's so frustrating that doctors know so little about it! I'm looking into studying a PhD so I can do some research into this. Thank you for sharing!
Thank you for sharing. My adult niece in her thirties was born premature (2 pounds) with Triple X syndrome. She struggled intellectually, and socially and developed seizures that now are a regular occurrence. She too has heart issues and watching her struggle is heartbreaking. I came here to read, to learn, and just to be able to relate. Because she does not acknowledge she has this - - and it makes it hard to help. I wish I knew how to make it better.
Bonjour, nous habitons à Paris, ma fille de 6 ans a le syndrome du triple x, et malheureusement sur ma fille ya énormément de retard, quand je veux faire des recherches sur internet il n y a pas grand chose c'est vraiment dommage, jaimerai tellement être rassuré pour son avenir, est ce que ce retard sera toujours la? En tout cas merci pour votre vidéo
I’m getting checked for trisomy X tomorrow because I think there’s a possibility I could have it. I was diagnosed with Autism, but there’s a possibility it might be something else...I do have a couple of symptoms of trisomy x.
I’ve had a child and they said I don’t have that nor do I have the seizure disorder, I have the forgetfulness, irregular periods, slight ADHD, I’ve been getting some random chest pains suddenly, they’re doing a whole bunch of tests still.
I was diagnosed before I was born, my mom created a website for it and has tried making more awareness about it here in Denmark
Can you share the website?
@@rabagoces the website is in danish without translation, we are currently updating it so I will link you when it’s updated
Collect your information, quote who says what so people who are trying to research can go to the correct source, place can feedback to their own Dr.
I have 14 year old twins, one boy and one girl. My daughter was born with Triple X, and over her elementary school and middle school years, she developed learning issues. She has ADHD, for which she takes medication. She has recently developed anxiety and depression, she has ongoing stomach issues (I myself I Crohn's Disease, so it never occurred to me that her stomach issues might be linked to Trisomy X and not that), is quite tall (I myself am 6'1" tall) and is possessed of quite long legs. We have never talked much about her having the syndrome, and not much with her. She receives services at school for learning issues, but since she has started high school (we are in the US, so she is in 9th grade), it all seems to be worse. That is to say nothing of living in a global pandemic and having to take their high school courses via computer at home.
All this to say, thank you for sharing this video. I only wish I would have found it sooner.
Gosh it is strange how so many of us have so much similar conditions yet there's barely any research done!! Thank you for reaching out. I wish you the best for your family and I'm here if you need to chat! I'm @little_disractions on Instagram! :)
I have triple x syndrome and my only baby was took away from me personally because his dad didn't want to be happy with me anymore 😢😢😢
I found out I have Trisomy X at 21 when I was pregnant with my first child. I had to undergo genetic testing to see if I was a carrier of downs syndrome, having a sibling with DS. Fortunately I am not a carrier. In my teens I had problems with my ovaries and was told it wouldn't be likely I would have children do to multiple cysts and my egg count was low. I took birth control to regulate my hormones. I have had stomach issues such as pancreatitis and issues with my gallbladder. I tend to get UTI's often. I have learning disabilities and I am slow. I like you am also very curious as to what else this links to such as mental disorders, health and other cosmetic abnormalities...When I was tested 20 years ago there wasn't much they could tell me because most people don't know so there is very little research. My doctor said that approximately 1 in 1000 women have it but I was the first in my city since 1932 and I am in a large city in Texas. I am praying for you ladies and thank you Sara for making this video and thanks to others that have shared too!
Wow congratulations on having a child though!! Thank you for sharing your story! 💖🤗
I have found out issues with my gallbladder of recently and wonder if me having triple x chromosome caused it now.
Also I live in Denton, Texas. North of Fort Worth and Dallas.
San Antonio here and my has it grown in the last 20 years!
My 10 year old daughter has Triple X Syndrome but she also has 1q21.1 micro deletion (after genetic testing found out I have 1q21.1 micro deletion to and passed it onto her). She has a learning disability (intellectual disability) and sensory issues, she has expressive and receptive language ability of a 5 yr old level, she’s impulsive and has difficulties in maintaining focus, is emotional and socially immature and has meltdowns and agressive/challenging behaviour and disruptive sleep pattern. other than an EHCP in place and speech and language therapy from 2-7 we’ve had no other help. we’ve just been kinda left to just get on with it. x
Oh gosh she sounds like me! I’ve never heard of 1q21.1, is that something told when you find out you have triple X syndrome? So sorry to hear you’ve not been able to get support ! Sending hugs 🤗 x
@@sarahslittlechats2493 thank you. The 1q21.1 micro deletion is a chromosome abnormality, it’s found the same way triple x syndrome is found (through blood genetic testing where they look at the chromosomes). it’s basically missing DNA (genes) on a specific part on the long arm of chromosome 1. it’s why her symptoms are more severe than mine because both her chromosome 1 abnormality and Triple X are interacting with each other and magnifying her symptoms. hopefully she will be going to a special needs secondary school after primary school so hoping that’ll help her learn more life skills etc. Fingers crossed x
We just discoverd that our 5 years girl has tripoli x ' it was so hard to know 😥 she can't speak just few words and it seems that she is behind her siblings and other issues, God helps us
I have some things you get I am mentally retareded, , other seizures ,
Can you have Triple X Syndrome when you are not Tall, I’m actually quite Short & I also don’t have Diagnosed Heart Palpitations, but I do have Autism, ADD, Global Developmental Delays, Dyslexia, Irlen’s Syndrome A.K.A. Scotopic Sensitivity Syndrome, Dysgraphia, Dyspraxia & Dyscalculia & Sensory Processing Disorder & Dysthymia, Generalized Anxiety Disorder, Panic Disorder, Obsessive Compulsive Disorder & My Counselor in University though I had Social Anxiety Disorder, Dissociation Disorder Most Likely Depersonalization\ Derealization Disorder & Borderline Personality Disorder Traits, as well as Bipolar 1 with Psychotic Features or Schizoaffective Bipolar Type, for physical issues I have G.E.R.D. & Polycystic Ovarian Syndrome & Hashimoto’s Disease, but I think that one’s unrelated!
Yes, I think you can.
❤️
My ex girlfriend Kerry from high school also has triple xxx syndrome and she was always doing research on it
I have triple x syndrome. I'm 31 now and my mom found out when i was 4.
I'm 31 but found out when I was 21. It seems to had been dormant and not so much bothering me till now.
youre really pretty
I have triple x syndrome i in my opinion don’t like it it makes me very tall and no doctors really get me and I bad at learning I also have a curved pinky but I never new it was a port of triple x
ıtzBlue Cookie I'm right there with you!! I'm tall too! I'm 5ft 6 - as tall as most guys here 🤣 x
itzBlue Cookie- I ironically have a friend who lives a few miles away that has trisomy x and she's like 5'2"? Meanwhile I have it and i'm 5'8" Typically tri x are tall.. or taller than their siblings. Come join my trisomy x page, it's just for people with trisomy x. No parents. =) facebook.com/groups/404920896234054/
I have a curved pinky and am 5'4.
Your not the only one. I'm going to be 33 this year and I just found out through my fertility doctor that I have Triple X Syndrome. Yay me. So instead of going and trying to have children I'm taking birth control. But to be fair, I've suffered before the diagnoses with UTI's and major learning disabilities. I know enough to get by. Just recently I've started becoming tingly and numb in my toes and fingertips. Havent been to go get that checked. I'm kind of afraid to go with everything going on in the world today. Plus, I'm just not good with bad test results. My doctor said I can still have children but the chances of it being genetically mine are low. Because my ovaries aren't producing many eggs. Only about 3 or 4 and they aren't sure how viable they are. Honestly, I feel lost about this diagnosis and I'm not sure what's going to happen from here. I feel like it's a mystery. I dont have facebook but I have IG. I would love to chat. I'm from the states. Miss West Virginia here. 😊
Wow what a story. Gosh it's strange how similar we are and yet there's not much research done into this condition! I just came back from the doctors (had a UTI and chest infection a few months ago, get them very often now), thought I had a UTI but it's all clear and worried its my duplex kidney now! Had a blood test and will wait to see. Gosh its been hell for me trying to get diagnosed with post overian failure, taken them 2 years to figure that out and like you, they've told me they don't think I'll genetically be able to have children. What's your Instagram? Mine is rosegoldsarah, if you find me can you send me a message so I know its you? Would love to chat too! I'm so sorry with what you have to go through! Sending hugs and support!! 💕 🤗
Hi, from Germany🤗
I also found out from my fertilility doctor, that I have Triple X Syndrome, and had also only 3-6 eggs with hormones. I'm 37 now and have two children, it worked even with so little eggs. I'm so grateful.
Nondisjunction💘...
XX and XXX humans have a variant mutation. Apparently one or both of their Parents are not from here.