Research around the world!

Includes listing and links to our other websites, blogs and support groups.

Moderators: jenjay, Cassie, patoco, Birdwatcher, Senior Moderators

Research around the world!

Postby blush » Wed Aug 16, 2006 5:33 am

Hi pat, its been a while since i contacted you. i was the one trying to start a young persons section on the website.
I am in ireland at the moment but am going to mainland europe soon and apart from drinking loads of beer in germany i was also hoping to get a massage in one of the best LE places in the world and also try to contact someone about any yougn people groups so i can try to impove mine back home and maybe set up othe ryoung people with others on the other side of the world. any help would be appreciated..
ta
blush
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Postby patoco » Wed Aug 16, 2006 8:12 am

Hi Ya Blush :D

Ohhhhhh in me old Eireland :wink: :!: :!:

Kiss the blarney stone for me :!: :!:

Tell ya what, I'll be more then happy to set up a young persons forum, if you want to be moderator of it.

Just let me know what you want and.....poof :idea: ...it will be there.

Have a wonderful trip to the mainland...

Good to hear from you

Pat
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Postby blush » Wed Aug 16, 2006 11:14 am

I'm doing my big tour of ireland soon... sooo pump!!
the country of good craic, grand things, guinness and paddys!!

Well my young peoples group is called LUPA(A)
Lymphoedema Under 50's Peer Aasssociation (australia)
but i was thinking of the 15-35 year age group as a focus for discussions what do you think?

id love to be a mediator. i will do my best while im away!!!

so what shall we call the section?
something boring and direct like
Lymphoedema-young people with LE (15-25yrs)

i think most of the sections under it will evolve into, careers, clothing, shoes, self awareness etc.
but i think itll be good just to start it up. these sort of thing find themselves the answers if u know what i mean?
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Postby patoco » Wed Aug 16, 2006 12:58 pm

Hi Ya Blush

ok :D ....take a look the forum has been created and you're the moderator.

Let you have it from here :wink:

BTW...haven't done any snow skiing with lymphedema...done water skiing though...what a blast :!: :!: :!:

If you get to Switzerland, hope you can check out one of the glaciers....its soooooo awesome to hike up to one.

Pat
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Postby blush » Thu Aug 17, 2006 6:10 am

hey pat
thanks heaps for your promt replies!!
just wondering if you would be able to somehow display the post in "our daily lives with lymphedema : just need to vent" it in the young peples secton. i think it is very relavent to us and it will be a good starter. is that possible?

thanks agina
blush!
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Postby blush » Thu Aug 17, 2006 6:17 am

i totally stuffed up the most important part . its supposed to be 15-35.. sorry..can that be changed on the heading?


ta
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Postby patoco » Thu Aug 17, 2006 8:16 am

Hi Ya Blush

Fixed the age group on the forum.

What I can do with the "just need to vent" is to cut and paste it into the young people's forums.

Good to hear from you...oh....another thing about Switzerland...omg...if you get there don't forget to stock up on the chocolate, especially the brand Frigor....absolutely to die for :P :P :P

Pat
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Postby blush » Thu Aug 17, 2006 9:22 am

thank you sooo much!!
ur a star!!
yum, i love chocolate...cant wait!!!!

blush :O)
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New Grandbaby

Postby Jimmie » Wed Sep 06, 2006 2:07 pm

From: theecheese@comcast.net (Cooke Household) [ Save Address ]
To: childrenwithlymphedema-suscribe@yahoo.com
Subject: New Baby with Millroy
Date: Wed, 6 Sep 2006 17:36:25 +0000


Hi,
My name is Kathleen and this is my story. My son and daughter in law gave birth to a healthy baby boy on August 24. He weighed 7lbs 9oz. He was put in a baby bed while he was being checked by the attending RN's. I noticed that his little feet were swollen and red in color, with all of the excitement of finally seeing this little guy after all of these months I focused on the way he looked so much like my son. After a couple of hours and all of the stuff they do after they are born, I asked one of the nurses why were his feet so swollen? she said it was a genetic...something! I then had the attending RN contact the doctor on call to check it out. My son was with my daughter-in-law in the hospital room taking care of her. She had delivered C-section and we were with the baby in the nursery. The Dr. came and spoke with my son in the nursery and said he had never seen a newborn with anything like this and would have to go home a pull out is text books. This is when I knew that I would have to start my own research. I really, did not want to interupt my son and daughter-in-law's moment of the birth of their first baby so I kept it to myself. After, doing research I need the help of everyone out there for what is considered Millroy's Disease.
Thank- You so much and God Bless
Kathleen


Main Entry : lymph-ede-ma
Variant(s): or chiefly Brit lymph-oe-de-ma \ " lim(p)-fi- ' dç-m\
Function: noun
: edema due to faulty lymphatic drain age
— lymph-edem-a-tous
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Postby silkie » Thu Sep 07, 2006 1:02 am

Hiya Kathleen
Congratulations Grandma!!! :D

there is so much info that Pat has on Milroys here
but what i really would like to recommend to you
is our children with lymphedema group
So many young parents that have come together in an amazing way
the help and support is wonderful it is like a huge family sharing
so much information hrelping each other please go to the link and see it for yourrself It is truely amazing they are always there for each other
and the knowledge they have gained from sharing i think helps them
more than doctors in their caring for the children The children are Beautiful live fun filled happy lives

http://health.groups.yahoo.com/group/ch ... ymphedema/

here is the link just press on it it will take you there
Pat saw the need for parents to have a place to get together
this is the result i think you will find friends and help there

Pat has had lymphedema all his life hes 53 and he has been more active than many hes got more energy than most people i have met
and his information and knowledge of lymphedema I think is the best there is

huggggggggggggggg
Silks xxxxxxxxxxxx
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Thank-You so Much

Postby Jimmie » Thu Sep 07, 2006 12:18 pm

Thanks so much
I have already started to recieve emails with information and great support. What a comfort to have all of this positive energy.
I will keep everyone posted.
Kathleen & Family
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