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X-ALD Help
United States
เข้าร่วมเมื่อ 20 ม.ค. 2022
If your child has been diagnosed with X-ALD, your sibling or someone you know was diagnosed, or you just want to learn about it then I am here to help.
My name is Elijah and I have X-ALD. I was diagnosed in 2007 (I was 6) and had a Bone Marrow Transplant in February of 2009 at the University of Minnesota.
Now that I have made it to the other side and am now 21 years old I would love to help you in any way possible with this journey.
Please leave as many questions in the comments of videos for me to make videos on. I would love to answer every question that you have about what the disease is, what treatment options are best, what is being tested currently, or even how to cope with it.
If you do not want your question to be public for others to see then that's okay too (although I would recommend it because having people go through this journey with you makes you not feel as alone). I will leave my email below if you would rather contact me that way.
Please feel free to reach out.
My name is Elijah and I have X-ALD. I was diagnosed in 2007 (I was 6) and had a Bone Marrow Transplant in February of 2009 at the University of Minnesota.
Now that I have made it to the other side and am now 21 years old I would love to help you in any way possible with this journey.
Please leave as many questions in the comments of videos for me to make videos on. I would love to answer every question that you have about what the disease is, what treatment options are best, what is being tested currently, or even how to cope with it.
If you do not want your question to be public for others to see then that's okay too (although I would recommend it because having people go through this journey with you makes you not feel as alone). I will leave my email below if you would rather contact me that way.
Please feel free to reach out.
The Science Behind ALD - What is ALD?
The Science Behind ALD - What is ALD?
______________________________
WANT TO HELP?
aldnr.umn.edu
med.umn.edu/pediatrics/programs-and-centers/leukodystrophy-center/adrenoleukodystrophy-ald
FOR QUESTIONS
Comment, DM me, or email xaldhelp@gmail.com
SOCIAL MEDIA
Instagram aldhelp?igshid=YmMyMTA2M2Y=
TikTok vm.tiktok.com/ZTd9RaQ7u/
______________________________
WANT TO HELP?
aldnr.umn.edu
med.umn.edu/pediatrics/programs-and-centers/leukodystrophy-center/adrenoleukodystrophy-ald
FOR QUESTIONS
Comment, DM me, or email xaldhelp@gmail.com
SOCIAL MEDIA
Instagram aldhelp?igshid=YmMyMTA2M2Y=
TikTok vm.tiktok.com/ZTd9RaQ7u/
มุมมอง: 50
วีดีโอ
ALD Explained - Made For Kids
มุมมอง 542 ปีที่แล้ว
ALD Explained - Made for Kids WANT TO HELP? aldnr.umn.edu med.umn.edu/pediatrics/programs-and-centers/leukodystrophy-center/adrenoleukodystrophy-ald FOR QUESTIONS Comment, DM me, or email xaldhelp@gmail.com SOCIAL MEDIA Instagram aldhelp?igshid=YmMyMTA2M2Y= TikTok vm.tiktok.com/ZTd9RaQ7u/
The Hardest Thing I’ve Ever Been Through - My Battle with ALD
มุมมอง 7222 ปีที่แล้ว
The Hardest Thing I’ve Ever Been Through - My Battle with ALD WANT TO HELP? aldnr.umn.edu med.umn.edu/pediatrics/programs-and-centers/leukodystrophy-center/adrenoleukodystrophy-ald FOR QUESTIONS Comment, DM me, or email xaldhelp@gmail.com SOCIAL MEDIA Instagram aldhelp?igshid=YmMyMTA2M2Y= TikTok vm.tiktok.com/ZTd9RaQ7u/ REFERENCES Aubourg P, Adamsbaum C, Lavallard-Rousseau MC, Roc...
I started watching this video because you are my favourite magician who has taught me a lot and given freely of your time and talent to this 74 year old grandfather. For my most recent birthday my 7 year old granddaughter performed a card trick on FaceTime because of the card magic we have been sharing since I discovered your channel about a year and a half ago. As difficult as it was to hear your story, I watched it several times to make sure I understood everything and for my deep respect for you. It was very heartbreaking on the one hand but positive to learn that you are thriving as a college student, drummer, magician and probably accomplished in other areas that you are too modest to share. You are fortunate to have such a loving family. God doesn’t put more on your plate that you can endure, but he stretched the limit when you went through your bone marrow transplant. By sharing your story, you will give hope to many others. You have my deepest respect. Thank you for listening.
Thank you so much for this my friend. This was exactly what I needed today. I'm so glad I could help you and your granddaughters relationship. And thanks so much for being so thoughtful not only to watch the video but to understand. That meant the world to me.