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In a story written by Jackie MacMullan and published on ESPN.com, it was revealed the Hall of Fame basketball player Nate “Tiny” Archibald has been living with amyloidosis.
raredr.com

It has been a while since posting due to my busy college schedule but I want to put some resource info here & reiterate the importance of going to a center of excellence which specializes in Amyloidosis. I'm sorry not sorry if this is harsh but...SWALLOW YOUR PRIDE! ASK FOR HELP!!! Hospitals like Mayo have wonderful assistance programs, there are many free or very cheap options for accommodations when you need to go to Mayo for evaluation or treatment. Check with your church ...affiliates & see if your denomination or a friends has a place in Rochester. Some have a similar setup to Ronald McDonald House. And DEFINITELY join Amyloidosis Support Group on facebook AND check out their webpage @ www.amyloidosissupport.org Muriel Finkle is a wealth of information.
NEVER NEVER NEVER EVER accept the words "there is nothing we can do" from local doctors!!! They know nearly nothing about this disease & its effects on each organ involved.
SWALLOW YOUR PRIDE, ASK FOR HELP, SEEK TREATMENT FROM A QUALIFIED FACILITY SUCH AS MAYO OR BOSTON NOW! THERE IS NO TIME TO WASTE WHATSOEVER WITH AL AMYLOIDOSIS, NONE!!!
As I said, sorry not sorry because I have seen too many die that could have been saved. THERE ARE TREATMENTS!!! THERE IS HOPE!!!

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amyloidosissupport.or
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Just a little education for family & those who wish to help widows & widowers. #1 Grief/Mourning last the remainder of your life. There is no time limit. #2 Our past is forever part of our present & future do NOT tell us to leave it behind us. #3 Talk to us about our spouse. Share your memories because we need to know others remember them & miss them too! #4 Send us cards, call us, & celebrate our wedding anniversaries!!! It really hurts when your immediate family says & does nothing! #5 Remember their Angelversary with us. Once again we need to know they're missed and that someone still cares about us too!

With Mike's Angelversary approaching July 23 I would like to remind everyone to spread Amyloidosis Awareness. For information go to AmyloidosisSupportGroup.org &/or Amyloidosis.org. Please, seek a center of excellence if you have been diagnosed with Amyloidosis or Multiple Myeloma (underlying cause of Mike's amyloidosis). Only centers of excellence have TEAMS of doctors who are aware and up to date on treatments for each and every organ and disease involved. This is crucial t...o longevity and quality of life. There is no good excuse for not going to one. There are financial resources available. I know from experience Mayo will contact your insurance to help you with approval and will do all they can to make your medications extremely affordable. They are more than willing to answer any questions you may have, even giving you places to inquire to about staying on a low income budget. I can honestly say we stepped out not knowing how we would pay for the expenses, including travel, food, and hotel, but God worked it out. I do not want to see another family endure what ours has. Fours years without Mike has seemed like an eternity!!!

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Four years ago today we heard of the horrible disease, AMYLOIDOSIS, that stole Mike from us. Even though I was busy today & hadn't thought of the date my mind knew. Miss him as much today as the day we lost him.
Our lives keep moving forward but our hearts never stop hurting because no one & no thing can fill that hole or replace that half of who we are. We go on living as the other HALF of that person but life is never the same again. We can seem "normal" & "happy", we are but we're still missing a part of who we are. So we hide them deep down because others can't handle us talking about the other half of who we are & how the pain of loss never leaves. Only those who've experienced the loss of a spouse or worse, a child, can comprehend the sense of mourning that lingers until our final breath.

I'm sure there have been people look up Amyloidosis after seeing my car but... Today I actually had someone ask what it was while I was getting gas. Every ONE person who inquires or sees counts!
(My kids won't even put the small magnet on their cars 😢)

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Light-chain cardiac amyloidosis: strategies to promote early diagnosis and cardiac response
Abstract Below: Email Info@AmyloidosisSupport.org for complete article
Light-chain cardiac amyloidosis: strategies to promote early diagnosis and cardiac response
Martha Grogan, Angela Dispenzieri and Morie A Gertz
published online April 29, 2017 Heart

...

ABSTRACT
Amyloid light chain (AL) amyloidosis is a systemic disease characterised by the aggregation of misfolded immunoglobulin light chain (LC), predominantly in the heart and kidneys, causing organ failure. If untreated, the median survival of patients with cardiac AL amyloidosis is 6 months from the onset of heart failure. Protracted time to establish a diagnosis, often lasting >1 year, is a frequent factor in poor treatment outcomes. Cardiologists, to whom patients are often referred, frequently miss the opportunity to diagnose cardiac AL amyloidosis. Nearly all typical cardiac support measures, with the exception of diuretics, are ineffective and may even worsen clinical symptoms, emphasising the need for accurate diagnosis. Patients with severe cardiac involvement face poor outcomes; heart transplantation is rarely an option because of multiorgan involvement, rapid clinical decline and challenges in predicting which patients will respond to treatment of the underlying plasma cell disorder. Early diagnosis and prompt treatment with ‘source therapies’ that limit the production of amyloidogenic LC are associated with better survival and improvement in organ function after a median of 2.4 months following haematological complete response. However, organ recovery is often incomplete because these source therapies do not directly target deposited amyloid. Emerging amyloid-directed therapies may attenuate, and potentially reverse, organ dysfunction by clearing existing amyloid and inhibiting fibril formation of circulating aggregates. Improved recognition of AL amyloidosis by cardiologists
allows for earlier treatment and improved outcomes.

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i. Monoclonal protein in the serum and/or urine by immunofixation electrophoresis AND/OR ii. Abnormal serum free light chain assay AND/OR iii. Clonal plasma cell population in the bone marrow demonstrated by immunohistochemistry, flow cytometry or in situ hybridization AND
clinicaltrials.gov

Fat Pad biopsy seems to be more accurate than marrow smears with Congo Red staining. Read the article.

(2017). Amyloid in bone marrow smears in systemic light-chain amyloidosis. Amyloid. Ahead of Print. doi: 10.1080/13506129.2017.1314959
tandfonline.com

Get the facts about the various types of amyloidosis here. Please share and spread amyloidosis awareness:
http://www.amyloidosis.org/facts/

Supporting amyloidosis patients and their families while promoting research, education and awareness. www.amyloidosis.org 1-877-AMYLOID info@amyloidosis.org
amyloidosis.org

It's official!
I have been accepted into
MSSU's Social Work Program.

3rd program I've been accepted into. (Yes I've changed my major twice, acting just like a teenage college student 😁) I started out with radiology, switched to respiratory therapy, & after some health issues I was forced to change to something less physical. I hope to pursue my Masters & become a grief & marriage counselor. ...
God set me on this path to begin with but I had to go & get lost on my own road before he gently steered me back where I belonged.

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Rob Stafford, principal news anchor at NBC 5, said Wednesday he will undergo a bone marrow transplant and chemotherapy to treat a rare blood disorder.
robertfeder.com
 at Boston University School of Medicine and Boston Medical Center is recognized internationally as a leader in basic and clinical research on amyloidosis and related diseases.  Recently,
bu.edu

New AL Treatment not the NEOD

New treatment options are now available for light-chain amyloidosis, with additional ones on the way, according to a presentation at the 21st Annual International Congress on Hematologic Malignancies.
cancernetwork.com
Oncology News Burst
www.fda.gov

Mark your calendar!
FEBRUARY 28th is RARE DISEASE DAY!
Wear maroon or orange!
(Represent Amyloidosis, Multiple Myeloma)

Help Amyloidosis patients by donating &/or participating please.

APR15
Sat 10:00 AM MDTCity Park, DenverDenver, CO
96 people interested