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epasen

Update on Emmi aka Epasen

16 posts in this topic

Hi everyone!

 

Wow it's been such a wild winter/spring for me. I haven't been posting much but I've been reading your posts regularly (almost daily).

 

I was selected to be the secretary of Finnish Scleroderma Association which is an affiliate of the International Scleroderma Network. It's been a lot of work and at times really time consuming but just last weekend when we had our member cruise I had few moments when I remembered why I do this. It was pretty rewarding after all.

 

I saw a new rheumatologist too. My own sent me to Helsinki to see a specialist who ordered a bunch of tests (heart, lungs, x-rays etc.) even though there should be nothing wrong with my internals. Well at least this one wants to really figure out what's going on with me before deciding on any treatment. I don't know when I'll see him again, hopefully before summer.

 

I finished my upper secondary school: finals went extremely well, I got pretty good results and I'm happy. Now I need to apply to universities and I'm studying for the entrance exams which are pretty hard here in Finland.

 

OH AND OH! I'm also participating the EULAR (European League Against Rheumatism) congress in Copenhagen this June! I took part in a writing competition which EULAR arranged. The topic was My Rare Condition and apparently my entry was the best in Europe this year. This is pretty hard for me to understand since I really didn't take it too seriously, the whole competition and all. Now they're doing a pretty huge deal about it: publishing a booklet with 16 best entries, and THEY EVEN INVITED ME TO SPEAK IN THE CONGRESS! They wish I'd give a lecture of 20 minutes on the subject Winner of Stene Prize 2009: My rare condition.

 

You can imagine how huge this is for 19-year-old who's first language ain't English. I mean it's a huge honor, but I don't feel like I'm an expert in anything else than my own life. Sometimes not even in it.

 

Anyway, if anyone else in there is going to be there too, it would be wonderful to meet or something. Anyone from Europe heh?

 

Inspired by my succession in this competition (and because my friends asked) I started a blog with a topic Living with Sclero. It's in English so if you want to check it out please click on my link from the main sclero site! My competition entry is also there.

 

Thank you for your existence people, you've been a huge help to me with scleroderma and everything else.

 

Take care,

with love,

Emmi

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Hi Emmi,

 

I'm thrilled for you, having your article win and even being invited to speak at the EULAR conference! That is a huge honor but I can't hardly think of a more deserving person. You go for it and we'll all be rooting for you!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Emmi

 

It is so good to hear from you and to know how well you've been doing, it's certainly been a busy time for you.

 

Look forward to hearing from you in the chatroom again when you have the time.

 

Congratulations on your success.

 

Jensue

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Emmi,

 

You are AWESOME!!!!!! Congratulations on everything: your position with FSA, your finishing upper secondary school and applying to university, your essay, getting your essay selected and then WINNING!!!! If you've accomplished all of this at 19, I can't wait to see what you will accomplish in the next 20 years.

 

Congratulation Darlin'! You make us all very proud!


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Wow, Emmi, you rock! All of your news is fabulous and congratulations are in order. What do you want to study in University? I am absolutely positive you will do well on your entrance exams. Dare I hope you want to be a scleroderma researcher?

 

Excited (for you) hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Emmi,

 

What fantastic news!

 

Your star is definately rising fast and there is no end in sight for you, and to think that you are doing all of this while studying for and doing your finals as well as getting ready for the entrance exams... you are an inspiration!

 

I think that the future of the world is definitely in good hands with people like you entering University and like Jeannie, put in a little gentle nudge in hopes that you might consider being a scleroderma researcher. ;)

 

Congrats... you deserve it.

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I think this is all absolutely terrific, Emmi -- it is great to hear that you are managing so much in your life in spite of your difficulties: an inspiration to us all.

 

I enjoyed reading your blog. I am very proud of you.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi Emmi ,

 

Congratulations from me, too!!! Your English is fine, so don't fret over that. Good luck with the studies & entrance exams and I hope you get into the University of your choice.

 

Take care, Everyone.

Margaret

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Emmi,

 

Congratulations - sound like you have had a successful and busy winter. Feel good about your accomplishments - you deserve it.

 

Jill

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Emmi,

 

I loved reading your blogs. I am 52 and wasn't diagnosis with CREST until I was 49, though I think I had had it for at least 8 years before. I was a ballerina. I loved it. I also choreographed. The images you created when talking about your dancing really touched me.

 

Keep up your positive thoughts and keep on dancing!

 

Take care,

 

Nan

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When I first came on this site back in August of 2008 you were a constant prescence. I was always so amazed on how spectacular you were at your young age. Your parents have to be so proud of you and what you have accomplished. Your future is so bright and you are only at the beginning of what you are going to do in this world. To have you as our "voice" out there on this disease is the best voice we could have. You are an inspiration and I couldn't be more proud of you. I really admire you and I beam at your accomplishments and tenacity.

 

I will be checking out your blog on a daily basis and will be adding it to my favorites.

 

I so wish you Good Luck on your speaking engagement. I am sure you will do wonderful. I told you before I was half Finnish and from one Finlander to another: Good Job!!!!

 

Warm hugs,

 

Peggy

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WOW, WOW, WOW EMMI!!

 

That is absolutely wonderful news... glad to hear you are doing well! Congratulations and know that we are also very proud of you; keep moving those mountains!!!


Sending good wishes your way!

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Congratulations! You really are amazing! I am about to go to your blog and also read your essay. Keep up the good work.

 

Mary in Texas

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Wow you guys can not believe how amazed I was when I read your comments.. THANK YOU ALL FOR YOUR WONDERFUL WORDS! You almost made me cry out of joy. I've never felt more accepted than I have felt here. Thank you for being part of my life.

 

I'm applying to Helsinki University of Technology. I used to dream about making sclero research but here in Finland we have only like 500 sclero patients so the chances for that are pretty low.. But we'll see where I'll end up. ;)

 

Take care you all,

hugs,

Emmi

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Emmi, I'm absolutely sure you will be a stand-out at what ever you chose to do. I'm very proud to be one of your ISN 'aunts'.

 

Big hugs, Sweetie.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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