Young people

[Kami]

Hello Everyone!

I have a question to ask. My daughter and I have a support group for vasculitis in Minnesota and this weekend I met the most remarkable young lady. She has had vasculitis for around a year and she had a kidney transplant in October. My question is are there any young people on here that would be willing to friend her? She is 13 years old and all of the people she has met are way older than her, it would be nice if she could find someone closer to her age. Let me know if you're interested.
Thank you!
Hope everyone is doing well!
Kami

[pberggren1]

That is nice she had the courage to at least come out to your meeting.

[Kami]

Hi Phil! It is, I am so glad she came. Her and her mom came and I think they had fun. We had kind of a goofy meeting, no medcal info or speaker, just fun Christmas games. We did have some really good sharing by all the members. I am hoping they come back again. I think the group is helpful or enjoyable for her mom but I would really like to find someone that the daughter can share with. My daughter and her played games and I think that was good. I hope we can find a teenager somewhere! :)

[pberggren1]

I know of a few other Vasculitis patients in their teens on facebook. And I know many parents of vasci teens as well. Most parents have a hard time with their teens because they don't take their meds or listen to their doctors. Boys seem to be the worst.

[annekat]

There've been some great younger people on this forum, in their teens, but we haven't heard from them in awhile, that I know of. I hope one of them will see this. I wonder how Rini is doing and if anyone knows. Also, Holly, whose dad was the main one writing in about her, I think. And I'm pretty sure there were others.

[pberggren1]

Rini is doing well now, just getting over a cold.

I haven't heard about Holly in ages. I wonder where Daggar is these days.

[annekat]

Thanks, Phil! Glad to hear Rini is doing well. I seem to remember her being in the midwest, though maybe not Minnesota. Kami, we have a WegsMap, I can't find how to insert the link from here, and a member list where you might be able to find out about younger members. Probably the best will be word of mouth, though.

I hope not hearing about Holly means she's doing well. And I'm forgetting who Daggar is, though the name is familiar. (Holly's dad?)

[pberggren1]

Yes, Daggar is Holly's dad. A very nice guy.

[mama2005]

hope that she can find someone close to age it really does help to know someone else your age knows how you feel.

[Kami]

Thanks Phil for posting that news report of the two girls that met in the hospital. I have shared it with everyone in our support group and I am hoping that our young lady may be able to contact them at some point. THANK YOU!!!!!!!!!
Have a great day everyone!!

[rebekah]

I'm so glad she was able to come out and meet people who are going through the same thing she is, and get her mind off of it a little by playing games and having fun. I do hope she is able to get in contact with someone her age; that would be great! Random question Kami, where did you get your shirt in the picture - I love it and want one!

[whatthewhat]

Hello Everyone!

I have a question to ask. My daughter and I have a support group for vasculitis in Minnesota and this weekend I met the most remarkable young lady. She has had vasculitis for around a year and she had a kidney transplant in October. My question is are there any young people on here that would be willing to friend her? She is 13 years old and all of the people she has met are way older than her, it would be nice if she could find someone closer to her age. Let me know if you're interested.
Thank you!
Hope everyone is doing well!
Kami
Hey, Kami, private message me - my daughter was just diagnosed at age 14.5...

[KimH]

My daugther was diagnosed with lupus at 13 . Her Rhuemy gave us info about a camp for kids with arthritis. Liz attended for five summers and made life long friends. Perhaps there is something out your way. The ArthritisFoundation helped pay for the camp which isnear Dartmouth.

[Rini]

Thanks, Phil! Glad to hear Rini is doing well. I seem to remember her being in the midwest, though maybe not Minnesota. Kami, we have a WegsMap, I can't find how to insert the link from here, and a member list where you might be able to find out about younger members. Probably the best will be word of mouth, though.

I hope not hearing about Holly means she's doing well. And I'm forgetting who Daggar is, though the name is familiar. (Holly's dad?)

I have been away fighting college. I had my tear duct implant put in and finnally taken out. I have moved into a house with a big dog. My body os letting me do my in walking and swimming but as my external ingeries heal i have less an less to "feel" and have the internal fight. I tried to ad this new teen but she drooped off my map a bit back. I have found a few people on facebook and lost a lot of mentors on the forum...been avoiding it all i guess. I feel like with the drugs and anxiety finals are imposible and I am a never ending roller coaster. I maxed out my school councilors and am really at a loss what to do now I cannot find roommate for the house, get the grades i need in school, work any real hours or remember simple combinations of chores. nut I have a "new" bf who had been very optimistic and tried to do his best to be supportive. What have i missed while away?

[Rini]

hope that she can find someone close to age it really does help to know someone else your age knows how you feel.



thank you again for coming out to see me!

[pberggren1]

I'm glad you are okay overall. I miss our conversations. I hope your new bf can help you with the stress thing.

[annekat]

Glad to see you back on the forum, Rini! Mainly, I guess you have missed a bunch of new members. (Plus we lost Lightwarrior, sad to say. I think we lost Al when you were still on here a lot.) It seems more and more people are getting dx'ed with WG all the time. Anyway, it sounds like you are doing well, having a pretty normal student life.... glad to hear about the bf! Keep in touch. :biggrin1:

[Rini]

Glad to see you back on the forum, Rini! Mainly, I guess you have missed a bunch of new members. (Plus we lost Lightwarrior, sad to say. I think we lost Al when you were still on here a lot.) It seems more and more people are getting dx'ed with WG all the time. Anyway, it sounds like you are doing well, having a pretty normal student life.... glad to hear about the bf! Keep in touch. :biggrin1:

yah lightwarrior was a hard hit and AI ,...i lost quite a few mentors this year. I am glad yall r holding in!

[mishb]

Great to see you again Rini,

As I have said on another thread, I don't know how I could have handled this at such a young age.

Not only do you have the sucky diagnosis of WG but you also have the same College struggles as most people your age, to try and deal with.
I am so glad that I don't have to cram for final exams, or try to also find work to help pay the bills and continue with the meds and everything else that goes along with WG.

I think you are doing an amazing job with keeping it all together and I hope you find a house mate soon.
I have faith that you will get those college marks you require and I look forward to the day you tell us of your graduation.

Keep strong and take care ........ or let the new bf take care of you

[rebekah]

Hi Rini,

I’m so sorry to hear that you’re trying to balance Weg’s, school, and everything else. I just finished finals and am graduating from college next week. I know it may be stressful at times, but you can get through this rough patch. I’m glad to hear you have a supportive boyfriend; it’s nice to have someone that can be by your side and support you through this. I wish you the best on your exams! Hope feel better soon!

[Rini]

Hi Rini,

I’m so sorry to hear that you’re trying to balance Weg’s, school, and everything else. I just finished finals and am graduating from college next week. I know it may be stressful at times, but you can get through this rough patch. I’m glad to hear you have a supportive boyfriend; it’s nice to have someone that can be by your side and support you through this. I wish you the best on your exams! Hope feel better soon!

GRADUATED! then their is hope !

thank you guys so much for the real support from people who completely understand!!!

[maria garcia]

I remember Dagger hope Holly has kept getting better. Kami I believe I know this girl she has MPA like my daughter. By the way MPA and wegners are very much alike except for the granulomas. Same symptoms same meds.

[pberggren1]

I think of Holly and Daggar often as well. I'm sure Holly is doing just fine.

[Rini]

Charlie in the UK is also recovering faster then I am! I know she is not on hear very much but her recovery story is VERY impressive.