Comments for Sickle Cell Disease Advocates of Minnesota

Comment on Welcome to the new SCDAM Website by Sherry

Sherry — Tue, 02 Mar 2010 13:53:24 +0000

Hello,
I am a proud grandmother of 8 and have two granddaughters who have struggled with this disease. One granddaughter had a transplant a few years ago and is now disease free but still has the trait; the other with prayers will go through the bone marrow transplant sometime 2011. In the past years Sharon (other grandmother) and Norma (great grandmother), and I have been advocates (Grandma Advocates for Sickle Cell Disease) in helping to raise money and awarness to help my daughter and her husband raise money to help with medical expenses. Both have been on continued battle with insurance companies as well. Most times, we grandmothers have been advocating and funding raising in Des Moines, Iowa, in which I am orginally from. In the past I have contacted the Sickle Cell Disease Association in Illinois for information, brochures, etc. to handout. I would like to know more about the Association in Minnesota and to know if you also provide information for such events? At present I can be contacted via email at Sherry.Brewer@minneapolis.edu.
Thank you for taking the time and reading this message.

Comment on Race and Sickle Cell Disease by BrizeeGyrl76

BrizeeGyrl76 — Sat, 05 Dec 2009 23:13:10 +0000

OMG, How can I get them to do this survey here in Orlando??? I am a 33 yr old SCD patient & I know for a fact that there are’nt enough nurses, docters or staff for that matter who have interacted with us to have anything besides the stereotypical preconceptions of SCD patients. I have dealt with so many non-chalant, it does’nt mater one way or another to them, just really insensitive healthcare professionals. Don’t get me wrong, I know that I can be bitchey :EVIL: @ times but what else do you expect from someone that iz in a TREMENDOUS amout of pain. There is’nt a scale long enough to measure the excrutiating pain that we’re in!!! The staff takes things too too personal & start to lash out at the patient in return… I JUST HATE THE FACT THAT WE’RE TREATED LIKE DRUGGIES OR JUNKIES BEFORE THEY EVEN CHECK OUR LABS…PLEASE STOP DOING THAT! Oh, and when you realize that my crisis iz certain…just have the balls to apologize!!! I apologize all of the time , if/when I take my frustrations out on staff members…

Comment on Welcome to the new SCDAM Website by Margit Heald

Margit Heald — Thu, 26 Nov 2009 00:16:04 +0000

Hello! My name is Margit Heald. My brothers name is Arty Heald. Arty was recently diagnoised with a rare form of kidney cancer that is associated with SCD. My nephew also carries the SC trait. My brothers kidney has since been removed however, the cancer had already spread to his lungs. He is currently receiving chemo to fight the cancer and luckly for us the chemo has helped. We are all new to SCD and know very little about it. I am looking for resources to help my brother and our family through this tough time. I have included my brother’s webpage to this reply. Any help would be great. I was also wondering if SCDAM does any 5k walks or any other awarness fundraisers?
Thanks in advance for any information.
Margit Heald

Comment on What is Hydroxyurea (HU) by scdamboard

scdamboard — Sun, 22 Nov 2009 05:23:57 +0000

What do you want to do?

Comment on What is Hydroxyurea (HU) by Claireen chetty

Claireen chetty — Wed, 18 Nov 2009 12:58:54 +0000

I have SICKLE CELL ANEMIA + BONE problem and im 24yrs nw i have a baby who also as SCA. 2months ago the picked up i hav bone marrow as well in my right leg. I cant take it anymore.

Comment on THIRD ANNUAL MINNESOTA SICKLE CELL DISEASE CONFERENCE HOLDS 12TH OF SEPTEMBER, 2009 by Martin

Martin — Sun, 13 Sep 2009 02:08:36 +0000

The event this year was a total blast, little thing people takes for granted mean a lot. Information based on how to navigate health care and reimbursement system where all spelt out in detail by experts. If you couldn’t make it this year, please don’t fail next

Comment on THIRD ANNUAL MINNESOTA SICKLE CELL DISEASE CONFERENCE HOLDS 12TH OF SEPTEMBER, 2009 by SCDAM » Third Minnesota Sickel Cell Disease Conference was a success

SCDAM » Third Minnesota Sickel Cell Disease Conference was a success — Sat, 12 Sep 2009 23:44:19 +0000

[...] Latest Developments, Minnesota, Sickle Cell Disease category and has 0 Comments so far. The Third Annual Minnesota Sickle Cell Disease Conference was held today at Normandale Community College in Bloomington, Minnesota and has been judged a [...]

Comment on Conference Flyers by scdamboard

scdamboard — Sat, 05 Sep 2009 23:21:54 +0000

Dear Bridget,
thank you for your question. As a matter of fact, adult care for sickle cell disease has been a problem in MInnesota for quite a while. As we continue to raise awareness and organize events across the state, we hope that more and more providers like you will get more involved with advocacy. This is essential if we hope to see improved care for adults with SCD.
To answer specifically, most of the speakers work with children however there are eventys geared towards the care of adults. We home to see you there and thank you for cvisiting our site.

Comment on THIRD ANNUAL MINNESOTA SICKLE CELL DISEASE CONFERENCE HOLDS 12TH OF SEPTEMBER, 2009 by SCDAM » THIRD ANNUAL MINNESOTA SICKLE CELL DISEASE CONFERENCE … – The Facebook News

Wed, 02 Sep 2009 05:56:27 +0000

[...] scdamboard wrote an interesting post today onSCDAM Â» THIRD ANNUAL MINNESOTA SICKLE CELL DISEASE CONFERENCE …Here’s a quick excerpt [...]

Comment on Conference Flyers by Bridget Holmen

Bridget Holmen — Tue, 01 Sep 2009 20:05:33 +0000

Hello- I am wondering if this years conference will focus soley on Sickle Cell Disease as it relates to children?? We are looking for education/speakers/in-services with regards to the adult patient and Sickle Cell Disease. Specifically, I have been asked by my patients about Support Services and Support Groups. I have spoke with (and worked with) Doris Roundtree, and worked with Dr. M. Obinna Nwaneri, and am wondering if they would be interested in doing some inservices/ education with us. Look forward to hearing back, thank you for your excellent work and passion!