15 year old with wegeners

[phoebesamantha]

Hi everyone! I have a very long story of diagnosis. But while in the limbo of being undiagnosed I was given 6 blood transfusions. I have been on masses of doses of steroids and am now in remission, praying there will be no flare ups which affect my schooling. I was forced to take 4 months out! I was wondering if by any chance there was anyone here around my age who would like to become 'wegeners friends', however weird that sounds! I hope to hear from you soon![emoji4]

[rebekah]

I am so sorry to hear you are going through this, but I'm glad that you're in remission! I'm 24 but was diagnosed when I was 20. I can totally relate to how difficult it can be to balance school and your health, but I promise it can be done! I graduated from college in 2013, and after taking time off from school to focus on my health, I am now taking the pre-reqs needed to apply to graduate school. If you need someone to talk to, you can always message me and ask questions or vent. :)

[annekat]

Welcome, phoebesamantha! There IS a mother of a daughter around your age with WG who is a member here. I'm pretty sure she will see this and can get you two hooked up for someone to talk to. I don't think it will take long, as she comes on here fairly often. So, hang in there! There have been some others your age on here in the past, but we haven't heard from them lately. It's likely they have WG under control and are doing well! I'm glad to hear you are in remission and doing well, too.

Also, if you are on Facebook, there are some active groups on there for people with vasculitis and WG, and there could be some for younger people with rare or chronic diseases, I just haven't looked. If you want to hook up with any of us on Facebook, let us know! You can always send people private messages here, too.

Best wishes to you in keeping the disease under control! And if you feel like telling any or all of your story in detail, that is fine! There are no limits on venting, either, or on length of posts. We'd at least like to know where you are from, where you are getting treatment, and what your treatment routine has been. Everyone's story is a little different, and we can always learn from hearing what others have gone through. I'm glad you found the forum! :smile1:

[phoebesamantha]

Hi everyone! I am from the UK, there doesn't seem to be many around here! There seems to be a very small amount of people suffering from WG over here. I'm sure people all over the world don't know what WG is. But there's only a few doctors in the UK that actually understand this illness. I have had rituximab infusions, prednisone and am currently taking cellcept. My WG has killed off over 1/3 of my kidneys but I am still fighting through today! My main side effects are my kidneys (of course!), extreme fatigue and joint pains. I am extremely thankful to have come across this forum as it makes me feel as though there are people out there just like me! I hope to come into contact with your daughter soon, annecat! Xx

[annekat]

Hi everyone! I am from the UK, there doesn't seem to be many around here! There seems to be a very small amount of people suffering from WG over here. I'm sure people all over the world don't know what WG is. But there's only a few doctors in the UK that actually understand this illness. I have had rituximab infusions, prednisone and am currently taking cellcept. My WG has killed off over 1/3 of my kidneys but I am still fighting through today! My main side effects are my kidneys (of course!), extreme fatigue and joint pains. I am extremely thankful to have come across this forum as it makes me feel as though there are people out there just like me! I hope to come into contact with your daughter soon, annecat! Xx Actually, it isn't my daughter, the member's username is whatthewhat and she's the one with the daughter around your age. I just wanted to reassure you that I knew there'd be a connection on here to someone your age. She will notice you soon!

Also, there are several of us on here from the UK and you will see some of their posts, too, if you keep logging in to the forum. There is a worldwide map of Weggies accessed by a link in blue at the top right of the page. You can look there and see what UK members have added themselves to the map, and add yourself, if you'd like. If you see someone near you, you can always send them a private message and maybe even meet up.

[Alysia]

I sent you pm.

[whatthewhat]

Hey there! It's me, we connected, big hugs to everyone! Lol (okay, and let me add, it truly sux to be a kid with WG, from what I've seen. As my daughter says, every teen feels different, but I have the statistics to back it up!) I'm grateful for a forum that welcomes ALL Weggies (and their mommas!)

[phoebesamantha]

I am so grateful for the connection I have made from this forum!

[mishb]

Hi phoebesamantha and welcome to the best WG forum around.

I'm glad you have received some private messages in regards to your initial question, however it totally sucks that someone so young, had to find us.

[manchester5]

phoebesamantha - My daughter is 15 also. She was diagnosed last week. This is all so new to us and we aren't sure what is going to happen next, just trying to take it all in and educate ourselves on this disease. Allyson (my daughter) is also concerned like you about how this will affect her schooling and activities. Glad you are out there for us as we will be for you.

[annekat]

phoebesamantha - My daughter is 15 also. She was diagnosed last week. This is all so new to us and we aren't sure what is going to happen next, just trying to take it all in and educate ourselves on this disease. Allyson (my daughter) is also concerned like you about how this will affect her schooling and activities. Glad you are out there for us as we will be for you. Welcome, manchester5, and I'm very sorry to hear of your daughter's diagnosis. That is too young to be saddled with this crummy disease. The one good thing is that there is a lot more time for future research and advancements in treatments, maybe even a cure, to benefit Allyson, when many of us are a lot older and less likely to see that day. Best to you and her, and I'll check for your other post.

[Wegetarian]

For some local info you could check out the links at Vasculitis UK - The UK's Leading Vasculitis Charity (http://www.vasculitis.org.uk/) they seem to be quite active.

This charity seems to organize a lot of stuff, I think they also have a cabin you can use for free: The Lauren Currie Twilight Foundation (http://www.thelaurencurrietwilightfoundation.org/blog/)

gilders is from the UK, so maybe he could have some info about local groups. I know there are at least some 20-year olds in our local FB group, and have heard that many were diagnosed when they were in your age.