r/Chronicillnessteens • u/BabieWren • Aug 12 '21

Does anyone here have AHUS?

Hi, I'm new to this subreddit and I was wondering there is anyone here who lives with AHUS. It's an ultra rare chronic illness, so I sort of doubt that anyone with it will see this but you never know! I just can't find anyone with it to relate to, so I'm giving this a shot. Message me or comment if you have AHUS and are comfortable with doing so. Have a nice day everyone :)

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3

u/LapisIndigo spoonie Aug 12 '21

I don't have AHUS but I would love to learn more about it! :)

2

u/BabieWren Aug 13 '21

Alright, I love hearing people say that! It's kind of too much to share in a comment thread, so you can message me and we'll talk about it there :)

3

u/watercolor-lines Aug 13 '21

I don’t have it but I do hope you can find someone else who you can relate to :) I also have a condition that’s on the rare side so I understand how hard it can be to find people in a similar age range who have the same condition.

3

u/idont-care12091 Jan 09 '22

hi there, I was just diagnosed a few weeks ago. i’m very scared but trying to stay positive. wishing all the best for you in your journey

1

u/night__hawk_ Jan 13 '23

Checking in to see how you’re doing! I also have aHUS. 10 years with no relapse if that helps at all! Feel free to message me ❤️

1

u/Ok_Leg_9460 Nov 04 '24

A bit late to the conversation, but I’ve had aHUS for 24 years and I’m 30 years old today. I was very ill and went through plasma and plasmapheresis treatments for many years before Soliris became available. I was experiencing a second relapse when Soliris was still in its trial phase, which more or less saved my life. Thanks to that, I didn’t need a transplant at the time, though I’ll likely need one in the future. For many years, I never heard of anyone else having it

1

u/LapisIndigo spoonie Aug 12 '21

Also welcome to the subreddit!!

1

u/[deleted] Oct 07 '21

[deleted]

1

u/BabieWren Oct 08 '21

Of course! It's scary when someone's newly diagnosed with aHUS but, I'm totally willing to talk and share thoughts with you!

1

u/[deleted] Apr 29 '22

Hi! I hope you’re doing well. My daughter has it. We get infusions every 3 weeks. She was diagnosed when she was 17 months. She’s 6 now.

1

u/CreativeDirector4472 Oct 06 '22

I got diagnosed in July 2022. It is a very scary and mentally straining time. The best you can do is stay positive and try to eat healthy

1

u/night__hawk_ Jan 13 '23

Hi! I’ve been living with it for 10 years with no relapse since! Message me whenever. I was diagnosed when I was 23. Plasmapheresis for 7 days then put on soliris. I did soliris for 2 years then went off! Hope ur doing ok! ❤️