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Lady Deb

Scleroderma speech

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I am in the process of getting my BSN in nursing. The class I just finished was Healthcare informatics. We had to pick a website and write a paper, give a speech and do a power point on it. I picked this website since it is such a great help to me. The speech was last night and it went well. I got an A on the speech and the power point and an A+ on the paper. All the people in my class are already RN'S. So now they know of a website to go to to help them teach their patients and to let their patients know where they can go to to get information. I just want you all to know that I always sing praises of this site and all that I have learned and the support that you all give.

Thanks!

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Hey, Lady Deb

 

Great news on your grade and thanks for the help getting the word out. The more medical people who can become informed about scleroderma the better. And good luck with the rest of your work towards your BSN. How much longer?


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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Deb,

 

Thanks for chosing this site and topic for your paper. The more we spread the word, the better.

 

Karen

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Congrats :) on your speech and for doing all of us a huge favor! Not enough people know of this website let alone the disease, but I am so glad that you chose it. The idea of future nurses coming to this site for info. gives me hope for the future.

 

In Jan. I had to go to the emergency room because I spiked a fever after my port flush, The nurses got a training when they tried to start an IV. They let me go with some antibiotics. In Feb. after another port flush, I got severe shakes and spiked another fever and went to the emergency room. Turns out I had an infected port. I told them about the sclero, but since no one really knew about the condition they loaded me up with fluid which led to congestive heart failure and my lungs also filled with fluids. I was so scared. One of the nurses attending me, recalled my last visit and had a little training session with a couple of the others who were on duty.

 

The nurses will really benefit from your presentation. They may never come across a sclero patient, but if they do your presentation will really prepare them!!!

 

Best wishes on your career, looks like you are off to a great start!!!

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Why oh why, doesn't the medical field know more about this disease? Look how many in numbers we are. Why?


Tru

 

It is what it is...........

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Tru,

 

It's sad but true. Seems to me because we don't have an advocate to speak to congress for us to plead for funding like a Michael J Fox or a Randy Pausch. The only celeb that I can think of with any sort of involvement is Bob Segat and Jason Alexander who have been active in charities and donations, we just need more of a voice than we have.

 

Just my opinion.

 

Karen

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Sometimes they just do not want to know about it. I live in a small town and when I came back from a large medical centre I told my family docotor my diagnosis. He told me since this was such a rare desease he did not want to learn about it as he will never see it again, so he will let the expert take care of it. The problem for me is the expert is a 9 hour drive away.


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Wow, congratulations Lady Deb....I hope you're as proud of yourself as we are of you!! That is just fantastic....love your grades too, that takes a lot of hard work to accomplish!!


Sending good wishes your way!

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