Managing Emotions With Klinefelter Syndrome
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- Опубліковано 11 вер 2024
- It’s been an emotionally taxing few months for me. In my personal life I have been going thru an emotional battle and now I’m starting a new beginning. I’ve been touched by so many amazing people in this x and y variation community. livingwithxxy.org
I appreciate your videos . I’m 31 years old from NY I lived in Cali years serving our country and could never take my shirt off comfortably. Your videos have been clutch for 4 or 5 years . Thank you . I was diagnosed recently and finally have good health care to address some things and increase self love. Much love brother !
I was diagnosed with KS at 35 years old when my wife and I decided to try for a child. Now 2 years later and getting shots every 2 weeks it's helped in many ways but not in the way I wanted it to. I get down on myself a lot not being able to give my wife a child. But if they catch KS early enough there is a chance to still have children. I'm pretty normal like you besides I have a really high metabolism. I don't have breasts well besides from working out. Lol I get emotional easier than most. I have a few questions for you since you seem to know more about KS. I didn't know about a sport group either. I live just outside Omaha NE. Not to many people know I have KS. It was a huge wake up call when I was diagnosed though. All my struggles as a kid made sense. All the kids that bullied me because of my size. Lifting weights and not noticing any changes while other kids got bigger. I should start a channel but my worst part of my KS is my teeth. You have great teeth. Mine are breaking apart and just fall out. I always try to make the best ot of life even though it's tough at times. Keep your head up man.
I love the fact that you put so much love and care in to each video. Hope you are doing well Ryan.
Thank you
@@LivingwithXXY you are so welcome. You are such a great guy. Amazing energy.
Thank you,Ryan! I have a son,2.5 years old, very sweet and kind, also has KS..you help me to understand better about KS..i' m not worried anymore, i know that my boy is special and i' m very happy to have him!
Happy to help!
I was diagnosed with KS when i was 30 and im now 52, and i know what your feeling. Thank you for what your doing. Teach all about KS, bcuz ppl need to know.
Im on testosterone depo shots every mnth and i thank god I am on the meds. I was so depressed and didn't know what was wrong with me. Thank you for talking about it
I am 25 weeks pregnant with a Klinefelters baby, because of your videos, I have a new found hope, you are totally saving lives. My doctors and genetic counselors were all urging me to terminate the pregnancy. You have given hope to our family. Thank you from the bottom of my heart.
I’ve been hoping to reach out to you, but I’ve been hesitant. We are in Los Angeles, Ca.
It’s been a huge struggle, but just seeing your journey, I feel that as a registered nurse I could potentially have an impact like you have on others in my shoes...Again thank you...
Thank you for starting your own videos. I will keep sharing the ones you post! You are one brave mom to be!
Hope your child i healthy and doing well. I’ve had KS for 38 years and Gods blessed me with so many opportunities in life. Your son can have the same and be successful
You are so awesome, thank you for all these videos you're putting out there! Keep it up!
Thank you
Loved this video!So thankful for you and for all the support you have brought families
Hi, I have a son with klinefelter, he is 15 year old and is heartbreaking for me to see him not being able to have friends to socialize with because of his intellectually younger than his age and misunderstood a lot. He also has difficulty with his behavior and there is so much more his been through and as a mother I think a lot about his future. I hear you say he wants to be a chef too, I love him. I really wish I could find a support group with other children and parents who have children or adults with this syndrome. I try reaching out to the Regional Center because he is apart of the Regional Center but they where unable to give me any information about other parents or children with this so that I could talk to them and give each other support. There unable to give others information, but I thank you for making this videos. I thank father God for your courage and I pray He meets you where you are and helps you in all you do. Please is you can I would like to keep in contact with you. Thank you again and have a bless night. 🙏🏼♥️😇
facebook.com/groups/182753495837871/ Here is a facebook group I am Admin on. Please answer the questions to be accepted into the group.
My sister just got told her baby will have klinesfelter syndrome and i just want to let you know that you are very inspiring and gave my sister hope for her babies future. Thank you!
Thank you. Tell her not to worry so much. The internet can be a dark hole.
Hello Ryan, I was very excited about your video. It shows that you speak from the heart. Life in general is not easy for anyone, but I know that for you it is a bit more difficult, with more obstacles. Strength that you have it and you have it ... life is life, it is what we have.
Yea after finding out that i am an xxy 2 weeks ago i been im a shock and everything started making sense about my body and life. Kinda hard... but i have to have faith and adapt to survive.
The only thing we can do is believe in ourselves and not let the worries of the internet change who we are. Onwards and Upwards.
Living with XXY yes your right, my symptoms are way worse and more visible. Internet alone isnt the problem its the people who mock you and stair at you asif your an alien.
@@TheDarkleopard i feel you man
How are you feeling now? I'm watching your video from three years back.. I went through depression as well.. It felt like I was down a deep hole and everytime I felt like I was crawling up to the edge of the hole (feeling better) something would happen and I'd slide back down.. But over time with support from my frends and family, and a councellor I got through it.. I hope you have crawled out of your hole too. Its a terrible place to be but you gain wisdom from where you've been and can share it with others if you wish..
I kave KS too.. I was diagnosed when I was 26.. I'm now 56.. No medication whats so ever.. Like you said, you just have to get on with your life and make it the happiest one you can have.. If you've got people getting you down, get away from them and surround yourself with happier people or get away by yourself doing the things that make you happy..
Thats my pearl of wisdom - just to you..
I hope all is well in your world..
Keep smiling, brother. 😃
BTW..
You mentioned stickers?
Yea shoot us an email. Livingwithxxy@livingwithxxy.org
You are savings lives everyday, God Bless you Ryan!♥️🙏
Awww :(((((( sending lots of love and hugs
Such a great guy. I need your videos like air now
U are doing an excellent job and helping so many, priceless
Keep on going, you will have our support always 🙏
Thank you
God Bless You Ryan!♥️🙏
Excellent emotive video Ryan.
Thank you Zell.
I love You. I feel like your mom. Thanks You for bring hope and light yo Manu lives.
Wow, thank you
Dude, if you are ever feeling down just reach out. I know that I would offer any support I can and I'm sure most others would too.
Thanks for the videos, really helping me now since I just figured out I have KS. Haha, I don't feel so depressed now that there are good reasons why I have failed a lot of things. Too bad, we didn't have this technology back in the 70's.
Thanks for the support!
I had it 44 years now I have cut my arms 10 years ago when my mom died xxy
I get it but I’m always so tired and I’m sick of this feeling.
I have I'm filter syndrome and autism it's not fun but looking to meet people with the same thing as me and socialize and all that
Reach out to me I got I don't know if I said this before but I got xxyy and autism I understand everything that you're going through I have depression really bad I have anxiety really bad I don't go anywhere I really don't have any friends it'd be nice to have somebody that has the same thing as me that I can share me with I am out there looking for groups that I can join that I can do things with just make my life better
There is a group called the XXYY project on a website called www.genetic.org
waiting for your new video!! how long ?
U see I can from a village in Uganda. Africa maybe I hv Klinefelter .but I have no money to go for shake up.l feel like killing my self if am always bullied by boys because of being like a girl. I hv breasts even they pain me .hv hips. Every thing is for girls pliz can you help me.l am confused wat to do
Please don't give up. Life will get better! I'm sorry I can't do much for you. There are sources on youtube to help with anxiety and depression. I think there are also groups online where people with xxy meet. Having a peer group will help you! Please look for them. I hope you can get tested. There is nothing "wrong" with you! So what if you're a bit girly. If they are provoked by it, they probably have fragile masculinity themselfs. Please know their actions reflect who they are and have nothing to do with who you are! I wish you the very best! Stay strong!
Huggs
Aren't some of these emotions more from the testosterone treatments then from Klinefelter Syndrome itself. If you had not known you had Klinefelter as 75% of the people with this condition would be, would you be having these emotions? I think it is far better to know of these problems in childhood when some of your development can be normalized. Sure, there will still be treatment options if you found out later in life but the benefits will be less as the formative years will have passed. You're very lucky for your condition to have been known since birth, emotions and all.
Everyone has emotions. Mine are higher and thats ok. Could it be from the extra X, possibly, many of the men in our community say they have higher emotions and I dont view it as a bad thing. :)
@@LivingwithXXY Well, every diabetic on insulin knows that injecting a hormone is at best a rough approximation of what's needed at the time so with the treatment for KS being TTS, the testosterone levels will likely be slightly off most of the time both over and under in varying amounts. I'm saying this constant variation from what's needed is bound to mean varying emotions. The treatments may bring you to more normal levels but injections and patches are no where's as well regulated as natural unstimulated production (stimulated production is another matter and there is still debate about that such that type 2 diabetics are often treated with oral medications that stimulate insulin production but some patients wind up with dramatic lows from the oral meds and are better regulated when switched to basal insulin injections). I'm just it isn't just having enough testosterone but the regulation of the testosterone and as it can't match the regulation of natural production, the result should be varying emotions.
Remember folks were just a Homie with an extra Chromy
Hey Ryan, I suggest having your vitamin D level checked.
Yes I have that checked every time I do blood. Thanks!
Huggs