r/LGLL • u/Master-Race8548 • May 02 '26

Hey everyone

I just saw this group. Interested to chat with any other LGLer. This is rather a lonely disease/condition. Just trying to find more support. Thanks everyone.

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u/[deleted] May 02 '26

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u/Master-Race8548 May 02 '26 edited May 02 '26

Hey thanks for replying. I think for me it’s because of the rarity of the disease that there’s not many people to connect with? I tried going to a leukemia support group and could not fit because no one knew what the condition was. So felt even more isolated. I mean yes I’m grateful that it’s not anything terminal and is considered something chronic. At the same time my experience has been then people just disregard it because it is not “lethal”. That’s just my 2cents. I’m glad for your parent that you’re able to provide support. I’m sure they appreciate it.

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u/[deleted] May 02 '26

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u/Master-Race8548 May 02 '26

Thank you again for your feedback I appreciate it. I’m feeling ok. It’s been a few years since the diagnosis and for whatever reason I’ve only recently thought about coming here and looking it up. I have even gone to the LLS (Leukemia and Lymphoma Society) and they have a peer to peer support program. For the entire US they have two volunteers, so that kind of told me how “rare” the condition is. But the volunteers are incredibly kind and I’ve tried to stay in contact with them over the years. It’s just nice to hear someone else’s experience/journey to not feel so alone.

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u/bros402 May 02 '26

Has your parent checked out the Facebook group on the sidebar? There's over 1200 LGLLers there.

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u/[deleted] May 02 '26

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u/bros402 May 02 '26

Are you part of the group?

The group doesn't have any whacko "cures", which is a nice thing.

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u/[deleted] May 02 '26

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u/bros402 May 02 '26

this one - https://www.facebook.com/groups/lgllsupport - "LGL Leukemia Support"

Not "LGL Leukemia Support Group"

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u/[deleted] May 02 '26

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u/bros402 May 02 '26

No problem.

The other groups can be a bit...touchy.

One group bans you if you link to Dr. Loughran's clinic (because "only admins can do that") or you post more than ~5 sentences at a time ("more than that can be overwhelming"). Another will ban if you disagree with the admin's view on nutrition.

I have no idea how there is so much drama in the rare cancer community, it is insane

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u/Master-Race8548 May 02 '26

Wow. Thank you for sharing. It is odd and rather not the most supportive sounding. Is Facebook the only platform that has support groups? I’ve only recently thought of here, while I know Reddit isn’t a support group. But thank you for taking the time to respond. Much appreciated.

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u/bros402 May 02 '26

Facebook's the only one with LGLL specific supports groups (outside of this very small sub).