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Louisa Marion's Daugher Female Charlestown, RI United States: Like

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Louisa Marion's Daugher's Friends

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Louisa Marion's Daugher's Groups

Localized Amyloidosis (A…

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Beta-2 Microglobulin Amy…

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Familial Amyloidosis (AT…

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Secondary Amyloidosis (A…

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Primary Amyloidosis (AL)

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Louisa Marion's Daugher's Discussions

We are here if you need us!

Started May 17 0 Replies 1 Like

Dearest Amyloidosis Friends,Always know that we are always here if you need to talk to someone! We are always here to support you and be your friend! Stay Strong and Stay Positive, Dear Friends! Continue

Aquamarine

Started May 13 0 Replies 2 Likes

Aquamarine is the new color for our AMY Network. To me, it's a very peaceful color. I hope you all agree.(From the light blue of the sky to the deep blue of the sea, aquamarines shine over an…Continue

Amyloidosis Research Fund

Started this discussion. Last reply by dancermom Apr 27. 1 Reply 0 Likes

Dear Amyloidosis Members,There is a Amyloid Research Fund at Boston University that is asking for donations to help with the research of Amyloidosis. If you would like to look into it, here is there…Continue

SERENITY

Started Feb 18 0 Replies 2 Likes

God grant me the serenityto accept the things I cannot change; courage to change the things I can;and wisdom to know the difference.Continue

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Red Ribbon From John "JC" Colyer Red Ribbon From Meredyth

Louisa Marion's Daugher's Page

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Joanie, Scott Orn and Kay heaton joined Louisa Marion's Daugher's group

Primary Amyloidosis (AL)

Primary amyloidosis is an acquired plasma cell disorder in which a monoclonal immunoglobulin light chain is produced in the bone marrow and usually found in the blood or urine. AL amyloidosis occasionally occurs with multiple myeloma. The amyloid fibrils in this type of amyloidosis are made up of immunoglobulin light chain proteins (kappa or lambda).The short term for this type of amyloidosis is AL, for amyloid of light chain composition. Symptoms can occur in any organ of the body and…See More

6 hours ago

7 Comments 2 Likes

ModeratorLouisa Marion's Daugher left a comment for Sunny

"Welcome to the Amyloidosis Support Network, Sunny! My Mom passed away 20 years ago due to Amyloidosis. It is such a sad disease.Here are some ways to make the most of your membership in our Community: Ask questions by leaving comments…"

15 hours ago

ModeratorLouisa Marion's Daugher replied to dancermom's discussion Excellent Resources for Amyloidosis Patients

"Thanks for posting, dancermom! Whatever support our members receive is so helpful! Thank you ga_peach...you truly are a peach!"

Tuesday

mary cimeni liked Louisa Marion's Daugher's discussion New Partner - The Social Security Law Group

Tuesday

ModeratorLouisa Marion's Daugher replied to Ben Munoz's discussion What do you like to do to occupy your time with?

"You are amazing Windsor! My beloved Billy passed away 2 months ago. When I'm ready, I plan to adopt a dog from my local shelter. Thank you so much for what you do. "

Tuesday

ModeratorLouisa Marion's Daugher left a comment for Kay heaton

"Welcome to the Amyloidosis Support Network, Kay heaton!Here are some ways to make the most of your membership in our Community: Ask questions by leaving comments for other members, contributing to discussions, or opening one of your own. Answer…"

Tuesday

ModeratorLouisa Marion's Daugher gave a gift to Indians fan

Red Ribbon

From the Gift Store

Monday

ModeratorLouisa Marion's Daugher left a comment for Indians fan

"Welcome to the Amyloidosis Support Network, Indians Fan! Here are some ways to make the most of your membership in our Community: Ask questions by leaving comments for other members, contributing to discussions, or opening one of your…"

Monday

ModeratorLouisa Marion's Daugher replied to Armando Abrero's discussion What type of music comforts you?

"Jazz is what I love to comfort myself!"

Monday

ModeratorLouisa Marion's Daugher liked Ben Munoz's discussion What do you like to do to occupy your time with?

Monday

ModeratorLouisa Marion's Daugher replied to Ben Munoz's discussion What do you like to do to occupy your time with?

"Since my daughter has a 2 year old and is pregnant with twin boys, my time if filled up with helping her with her children."

Monday

windsor joined Louisa Marion's Daugher's group

Primary Amyloidosis (AL)

Sunday

7 Comments 2 Likes

windsor replied to Louisa Marion's Daugher's discussion New Partner - The Social Security Law Group

"Thank you he is still taking the chemo and hopefully the SCT will happen down the road I did sign up already for the webinar "

Sunday

Moderatorga_peach replied to Louisa Marion's Daugher's discussion New Partner - The Social Security Law Group

"SSD is Social Security Disability. I wish you had come to the Jacksonville meeting so Dr. Sher could have explained to you the reasons why SCT is not always available to those with Cardiac Amyloidosis. If your son will continue with his chemo as…"

Sunday

windsor replied to Louisa Marion's Daugher's discussion New Partner - The Social Security Law Group

"Can you explain what you mean by this please My son has cardiac involvement is this different from Cardiac Amyloidosis Do you mean stem cell transplant when you say SSD? Moffitt seems very reluctant to do a SCT on him…"

Sunday

windsor liked Louisa Marion's Daugher's group Primary Amyloidosis (AL)

Sunday

Profile Information

Are you a patient, relative, friend, caretaker or medical professional?: Relative

What Type of Amyloidosis do you have?: Primary (AL)

When were you (or the patient) diagnosed?: July 14, 1992

What medications and/or treatment have you tried?: No treatmen available at that time.

Please share your story with the community..(even a few words helps us know you are not a spammer. :)): My Mother was diagnosed, after a long series of tests, with Amyloidosis in 1992 and passed away 4 months later. At that time there was no treatments available to help her. We donated Mom's organs to Boston Medical Center. My hope is that they were used for research that put us where we are today with more treatments available!

How did you hear about us? (This information tells us how to best find new patients to help!): 1. Search (Google/Bing/Yahoo)

Would you like to recommend a surgeon, therapist, or a hospital?: Boston Medical Center

Why did you decide to join (multiple answers okay)?: Friendship: I wanted to connect with others, Cure: I want to help find a cure, Support: I want to help support others dealing with this, Information: I want to learn more about symptoms/treatment

Do you want to to OPT-IN of the Ben's Friends monthly newsletter (http://bensfriends.org/welcome/newsletters)?: Yes - please send me the monthly Ben's Friends Patient Communities newsletter.

What are you passionate about?: To find a cure for Amyloidosis!

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Louisa Marion's Daugher's Blog

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Primary AL Treatment Information

Posted on March 25, 2012 at 9:06pm 0 Comments 1 Like

http://www.amyloidosis.org/TreatmentInformation/primaryAL.html#primary

Comment Wall (39 comments)

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At 4:07am on May 10, 2013, Chris said…: The call was "dead air" when I got to it, but the fact that I realised that I had run about 25 metres & wasn't out of breath made that of little matter!

At 2:50am on April 25, 2013, Michelle said…: Thanks you so much, Louisa.

At 1:43am on April 9, 2013, DBT said…: I am happy to help! Thanks!

At 12:47am on April 9, 2013, Moderatorga_peach said…: Sure.... I am moderator on another group as well and will do what I can to keep up with the posts.

At 2:57am on April 8, 2013, DBT said…: I will be strong and I never focus on the negative--I am very lucky to be where I am right now. Thanks!

At 12:56am on April 8, 2013, DBT said…: Thank you for the welcome! I am trying to find anything that will help people with this disease. I was diagnosed 10 months ago and after my transplant in December, I am doing well. I have been back to work for a month and even worked from home beginning three weeks after transplant. I am very lucky--we found this very early and I have no organ damage. My doctor is thinking of doing two years of maintenance Velcade but we are meeting in a couple of weeks, after my next set of blood tests, to decide on the next steps.

At 2:47am on April 4, 2013, Michelle said…: Thanks for thinking of us. My husband just entered Sloan yesterday for his stem cell transplant. I turn 60 on his D+1...April 5th. You couldn't plan that if you tried. He is getting the transplant tomorrow.

At 4:28am on April 3, 2013, Jen F said…: Thanks. I appreciate that!

At 3:48am on October 16, 2012, StuartUK said…: Thanks - last year I had the eye-catching look, so got attention and got them to read out my reason for running at the end in front of the crowd, but the tv coverage finished just as I started running, so I'm in an earlier wave next time and am trying to contact the organisers to see if there's anything else I can do to get a mention on tv.

As my dad has been one of the luckier ones so far, I feel that I might come across quite positive, so if there's any way I can help with newly diagnosed people/carers on here, or just share more details of our journey so far please let me know.

At 5:42am on October 13, 2012, StuartUK said…: Thanks, I know we have been lucky so far after reading other comments from patients/relatives.

On a lighter note, I did another charity run earlier this year for Amyloidosis research at UCL and to raise more money I said I'd do it in the most popular fancy dress outfit suggested by everyone who sponsored me. That turned out to be very embarrassing!!! (see picture on link) charity page

As it raised quite a bit of money (and to try to get the disease mentioned on tv) I'm doing it in fancy dress again - as you can tell from the picture it would be hard to end up looking any worse!! I thought the picture might raise a giggle :)

Hope you have a good evening!

Stuart