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Adrenoleukodystrophy (ALD) Online Support Group

Hello! New member

#1

Hello. My name is Jillian. My son Grady’s (8, 7 atvtge tome) was diagnosed 8/17/18. With a Loes score of 10. I thought he was having a hard time hearing me and felt something was wrong. Pushed for an MRI and was diagnosed. He had a bone marrow transplant on 9/20/18 with a 10/10 unrelated donor match at Boston Children’s Hospital.
Grady is doing very well. Follow up MRI three weeks ago showed no progression.
We are still is such a whirlwind. The good and bad are so surreal.
I’m finally just letting myself look around and look for support groups and learn ways to support the ALD community.
We want to do anything and everything we can.
Thank you for adding me!!
Jillian :blue_heart:

#2

Pleased to meet you Jillian. My name is Mitchell and I’m 27 years old. I was diagnosed with ALD when I was 14. I am sorry to hear about your sons condition. I actually got very ill and the hospital diagnosed me with Addison’s disease, further checking into this condition was found to be ALD. I progressed with pain only for most of my teenaged years while slowly noticing my balance getting worse and worse. I now have the adult form of the disease known as AMN. I’m in a walker for now but am going to be in a wheelchair soon. I am thankful each day that I am still alive. I know there are people worse off than me so not really depressed. I am also a new member and looking for ways to interact with the community. I have a master’s degree in molecular genetics and wanted my ph d to research this disease more but life got in the way of that. I wish you all the best in your journey and know I’m always here for support or anything you need.
Best wishes
Mitch

#3

Thank you!!!
You sound like an incredibly strong man!!!
My son is doing great. His only deficit is Auditory Processing disorder. He is adapting very well. His three month post transplant showed zero progression, his lesion actually appeard a bit smaller. His neurologist said they had only seen that once before. Praying for continued zero progression.
Do you have suggestions for other groups or sites to join? Im trying to learn as much as I can and get as involved as I can.
Thank you for sharing your story with me.

#4

Welcome here, Jillian and Mitch! It’s great to have some new members, even if the reason for your arriving here is unfortunate. ALD is a very difficult condition, and having someone share that their son is doing well, and having another member greet them with warmth and optimism really is what this community is all about. We don’t come here for answers. We come to share our questions, our hopes, our frustrations and our generosity of spirit. Just knowing that we aren’t alone, and that there are others who understand, is a wonderful feeling. If an answer pops up in the process, that’s a bonus!

I’m Seenie, and I’m one of the members of the Moderator Support Team at Ben’s Friends, a network of over forty support communities for people whose lives have been touched by a rare disease or condition. My “home” community isn’t ALD, but I’m privileged to be able to work as a volunteer facilitator and administrator on the Ben’s Friends network. For so many of our members, arriving at a place where everyone “gets it” is an amazing experience.

Jillian, our search feature (magnifying glass, just to the left of your avatar, upper right) works pretty well. When you find a discussion that you’re interested in, do join in on the conversation. Often it will “revive” the conversation, and you will meet more people that way. If the conversation doesn’t get going again, please let ModSupport know: we have ways of tracking people down and letting them know that their conversation has resumed. This community is very quiet, and it would be great to get more people active again.

You can learn a bit about your fellow members by clicking on their avatar: that reveals their “members only” profile. Unfortunately, you will find a lot of members with empty profiles, because a while back we changed platforms and we weren’t able to import the data from the old software. To contact someone in the Modsupport team, click on our avatar wherever you see it, and then on “message” or use the email address near the top of the home page. We’ll get back to you!

We’re glad that you’re here, Jillian and Mitchell, and we hope that you will be too.

All the best to you

Seenie from Moderator Support (with TJ, Merl and Azurelle)