My Noonan Syndrome Journey
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- Опубліковано 7 вер 2024
- Hi everyone,
This is a very different video to what I normally film but I really wanted to share this part of my life and spread some awareness.
Useful Links:
www.nhs.uk/con...
www.noonansynd...
Natalie x
Thank you so much for sharing. I just found out my 2 year old son has Noonan syndrome and it’s so nice to hear others that are living with Noonan syndrome speak a bit about it. It can be a scary process for the parents in the beginning and it’s nice when others share their stories.
This is the reason why I wanted to share my story, I am so happy it's helping others. I wish you and your son all the best. If you have any questions then please let me know, I know my Mum would also help answer if you need something from a parents perspective. x
@@nataliekaminski hello fellow noony I also have noonans I'm proud of us
My daughter was born with noonan syndrome. She had open heart surgery at 2 months old and a stint put in at 2 years old. She was put on a transplant list after the open heart surgery because she went into congestive heart failure. She miraculously pulled through and improved though. She still has health problems but is a very opinionated 15 year old now 😁
It's amazing to hear about everyones different experiences with this condition. I'm so happy to hear she's doing well. 😊
Thank you so so much for sharing! We found out my 2 1/2year old son has noonans last week and hearing someone who has actually lived with the divergence really helps. You’re incredibly brave and it’s so reassuring to see how amazingly you’re thriving! 💜✨ xx
It's so exciting to see a noonie online! My brother was diagnosed at like 3 months, had JMML (leukaemia often associated with Noonans) and open heart surgery etc etc (he's 19 and thriving now!)
We are 99% my mum has it but genetic testing is crap and they weren't remotely thorough so she hasn't had confirmation.
We used to go to the noonan conference meets annually in the UK, it's just so nice to be surrounded by those who get it! The amount of Dr's who don't know what it is, is mad, so we loved going and not having to explain random life stuff.
Thanks for sharing this, it's so nice to see the community I grew up around in more mainstream settings 😊
Thank you so much for sharing! I feel like the more we talk about it the more we can educate, I'm so happy that people are finding this video and it's amazing hearing all the different stories and experiences.
The amount of time I have had to explain my condition to people is insane. One Dr said that they had never seen the condition outside of a textbook before me, with my recent heart surgery I had so many Doctors and Surgeons in training around me so at least they'll know about this condition. Apparently my case was their exam!
@@nataliekaminski Yes! My brother used to go to GOSH annually to basically help train Dr's on conditions like Noonans 😅 it's not even that rare statistically!
All my best wishes and prayers for you ❤my dear daughter was diagnosed with Noonan. She also has severe scoliosis & still strong as she could be 👍 anyways-ur smile brightened my heart -keep smiling
Thanks for sharing your story
My daughter is noonan
I'm grateful for finding your channel ❤️
Hi, Thank you for sharing. I'm so glad you found this channel, if there is anything you want me to talk about in a video then let me know. Wishing you and your daughter all the best. ❤
Me to I'm so grateful for your channel
Natalie, thank you so much for your video. My two and a half years old baby has Noonan Syndrome and she also has needed open heart surgery twice and two keyhole surgeries for the same condition. It is so inspiring seeing you and how well you do. It helps me to see the future from a more positive perspective. Take care! (from Barcelona, Spain)
I'm so sorry they have to go through this, I'm wishing them all the best and love to your whole family. It amazes me to see where my video is reaching and I'm so happy to know that this can bring even a small bit of comfort. x
Ahhh it's nice finding someone else who has it. I was born with it too (Mom's side for me)
I had to have heart surgery when I was little best wishes to you.
When you said “it’s going to be ok” at the end, I burst into tears. Thank you! My son is 5 and has MRAS noonan syndrome, just to see how amazing you’re doing brings us so much hope. You’re amazing. And you’re beautiful. X
Thank you! I'm so glad that this video has helped you and I'm sending all the love to your son and your whole family. It takes so much strength to raise someone with this condition and sometimes its hard to find people that understand. Everyone deserves to have hope. x
I’ve known I’ve had this condition for awile, I’m trying to motivate myself to not listen to all of the highschoolers bulling me for my height. Many people have told me I will not be successful because of that. This has been told to me my entire life.
I'm so sorry that you've had to deal with this that is a horrible situation to be in. Please know that height has nothing to do with how successful you can be, it may make some things more difficult but it doesn't stop us. Just know that people can be ignorant and I hope you know how much protentional you really have. What would you love to do?
Natalie, you are beautiful ❤ and so kind. You are a very compassionate person. I can see it by the way you shared your personal journey here with us to help others in similar situations. Thank you for sharing it. Your video brings hope and light for many many families that are looking for ways to help their loved ones. Thank you so much. Once again, you are beautiful ❤️😊
Thank you so much, that's so kind of you! Having this condition the least I can do is share my story and let others know that they aren't alone.
Thank you for sharing, it is good to hear from a young adult who faces the challenges Noonan's presently. My grandson age 9 was found to have Noonan's soon after birth due to physical charitarians then genetically confirmed. He has had many surgeries BUT doing great including open heart surgery. Challenges in learning, gaining weight, height but very active, happy and living a great life.
Wishing you and your family all the best. It can be a challenging thing to get your head around, it sounds like he has amazing support. x
Thank you for sharing! I will be doing research this summer on cardiac defects associated with Noonan syndrome and I've been catching up on the science behind it but you helped me get a better insight as to what it is like living with it. I hope your surgery went well and that you're doing well!
Thank you for sharing! I am a teacher who will share this with my students! You are sooo amazing , strong, and inspiring!
Thank you so much that's very kind of you! What kind of students do you teach?
Thanks for sharing your story, good luck.
Thank you!
Thank you for sharing, so inspiring...you are so strong...
I wish everyone with this condition get to see this video
Thanks for sharing. My nephew has Noonan's and it's good to learn more about it from you so thank you very much ❤️
Thank you so much for watching. When I searched for information regarding Noonan's I was a little surprised that no one had really shared their experiences. I'm happy to share mine and hope it helps people.
I was very interested in watching your video because videos about life experiencies with Noonan Syndrome are very rare. I have Noonan Syndrome as well but very different symptons. I was diagnosed very late, when I was 12 years old and they diagnosed me the same day with slow growth because my hypophysis doesn`t work very well. So I got growth hormones and now I´m 5.2 (I´m from Germany so we would say I´m 1,6 Meter ;) )
I wish you good luck with your heart surgery. I think it would be great, if more people would share their experiences with deseases like genetic syndromes especially rare deseases because it can help people to not feel alone.
Another Quesion: At about 10:00 you say down and noonan syndrome are sharing some symptoms. I always thought Turner and Noonan are sharing a lot of symptoms but down syndrome is very different in my opinion...
(Oh and sorry for making some mistakes in this text. I have never been good at foreign languages)
You've done amazingly with writing this so no worries. I feel like it's so important that we share these things as it helps connect us and let other people know their not alone, one reason why I made this video is because I couldn't find much on UA-cam.
I find it so interesting to learn when people were diagnosed as I feel this really changes a persons experience. Thank you for the good luck, I will definitely be posting more videos about this once this surgery happens.
From what I understand Turner syndrome use to be confused for Noonan syndrome but their were some characteristics that linked them however I am very aware that new information is found all the time with these conditions so what I've said maybe inaccurate.
Thank you for sharing your story.
@@nataliekaminski I also have Noonan's
Hello fellow noonie
I wish you good luck with your heart surgery💗
Thank you!
Thank you for sharing! My 10 month old is going through genetic testing right now and they think it may be noonan syndrome.
I'm so happy you found this video and hope it was helpful. Wishing all the best to you and your family. x
I have autism & learning difficulty
Thank you for sharing
U r so beautiful 😍 🤩 . Thank you for sharing ur experience
Thank you, that's so lovely of you to say. I'm happy to share and hope it helps people.
Good to hear from you ...Lets make a google forum so that everyone can share their story 😁
Thank you. It's so weird before I hadn't really come across other peoples stories and since making this video I've heard so many. 😄
Lets get connected via gmail 😁😁😁
@@milanpaudel9170 Sounds good, my gmail is nataliedkaminski@gmail.com.
I love learning more about noonan syndrome I didn't know I had it til I was like 10..
Wow. That's so interesting to hear, did finding out help you understand some things a little more?
@@nataliekaminski oh yes!!
I was diagnosed at birth with Noonan Syndrome and now I suspect I am autistic and idk im scared
Thank you for sharing. I know all this can be scary but you'll get there. My Mum and brother don't have my condition but they are autistic, some days are difficult but sometimes knowing can help you get things in place that will make life so much easier.
If you have any questions on anything then please ask.
I got diagnosed with Noonan syndrome when I was 32.
What symptoms did I feel? I knew I had it at the age of 24, but I had no symptoms
Have her symptoms appeared recently or could I be infected but not have symptoms?
My son was diagnosed with noonan syndrome. Actually NSML which is a sister syndrome . Happy to find others going through the same journey. Does anyone have ideas to raise awareness? Is there a noonan society? Id like to do a race or triathlon to raise money and awareness
Hi, It's great to hear others experience with this condition. Depending on where you live there are some organisations out there.
Here are some links -
www.noonansyndrome.org.uk/
noonansyndrome.com.au/
www.teamnoonan.org/
@@nataliekaminski thanks. I’m in NYC
I also have Nooan syndrome to
It always great to meet others who have it. If there is anything you want me to talk about in future videos then please let me know. x
I I have it
Do you have learning
Hi. I have dyslexia and mild learning difficulties, I also have some of the signs of Autism and ADHD however I haven't been tested.
@@nataliekaminski You have learning difficulties
Hi fellow noonei
Hi! It's amazing to be speaking to so many other people who have this condition.