Discussions

Supporting People Living with Sickle cell

seba
  • By seba · Posted November 28, 2013
  • In Living with sickle cell anemia · 0 replies
  • In Africa you hear about Donors coming in for NGOs which support people suffering in other diseases like HIV/AIDS, Cancer, Diabetes e.tc. But my worry is, For example in Uganda, I have never heard any ...

ugh

jasalikin
  • By jasalikin · Posted November 27, 2013
  • In Raising a child with sickle cell anemia · 1 reply
  • So today i had to take my four yr old to the sickle cell clinic and now we have to stay longer bc he had fever last night and a mild fever this morning. Im so exhausted two kids both with sickle cell ...

haemoglobin levels in sickle cell babies and adults

miriamkasera
  • By miriamkasera · Posted November 19, 2013
  • In Raising a child with sickle cell anemia · 5 replies
  • Dear family, have been a member for a while but this is my first post. Have been faithfully frequenting the site and genuinely grateful to meet people I can relate to. my last born was diagnosed with ...

NEW STUDY ON SICKLE CELL

ITESTIFYASICKLECELL

NIH INVESTIGATION OF MISSING SICKLE CELL FUNDS

ITESTIFYASICKLECELL
  • By ITESTIFYASICKLECELL · Posted November 17, 2013
  • In In the news · 0 replies
  • https://sendnow.acrobat.com/?i=YucX1nBL5 gvG99-tk87g8w I THINK I DID THIS RIGHT. PLZ BE PATIENT W/THE NEWBIE. THIS IS A LITTLE INFO ABOUT THE NIH INVESTIGATION AND THE REASONS WHY. MR AND MRS FRIEND OF ...

Interest in Sickle Cell Anemia

qalex93
  • By qalex93 · Posted November 13, 2013
  • In Living with sickle cell anemia · 8 replies
  • Hello all. My name is Alexandria and I am a college student currently enrolled in a health psychology course and am interested in sickle cell anemia. I want to learn about life with this chronic illness ...

pain made worse from sounds

mandolin
  • By mandolin · Posted November 13, 2013
  • In Sickle cell anemia · 3 replies
  • Im worried this might sound weird but emergency vehicle sirens cause me pain. after a siren sounds i basically brace myself because i know my chronic pains gonna get worse, i don't know why this happens ...

this might be of interest to some?

mandolin
  • By mandolin · Posted November 6, 2013
  • In Treatment · 4 replies
  • http://www.childrenshospital.org/news-an d-events/2013/october-2013/newly-discove red-gene-regulator-could-precisely-targe t-sickle-cell-disease ...

employment, training

mandolin
  • By mandolin · Posted November 3, 2013
  • In Sickle cell anemia · 6 replies
  • hello, I have sickle cell anaemia SS, I live in a small town here i am less stressed out (therefore less ill less pain ect) however i am stuck in low income jobs even though i have a bachelors degree ...

Sickle cell SS with alpha thalassemia Dr's found 3% A haemoglobin

kalliee
  • By kalliee · Posted November 1, 2013
  • In Sickle cell anemia · 21 replies
  • Hi All, I've been a silent supporter of this website since I found out my baby girl has sickle cell anemia (SS), she's 5 months old. I was and am still devastated by this news. I've learned so much from ...

You need to know

Doctorwright
  • By Doctorwright · Posted October 29, 2013
  • In Sickle cell trait · 4 replies
  • As far as I can remember I have been pretty healthy and very active. For about the last 8 yr. my pain has increased. I just found out about 7 days ago that I had sst . This is believed to be the cause ...

WHY THE DEFAMATION/DISRESPECT OF PPL W/OUR GENETIC ILLNESS?

ITESTIFYASICKLECELL
  • By ITESTIFYASICKLECELL · Posted October 28, 2013
  • In Living with sickle cell anemia · 5 replies
  • MY DR SAID TO ME.."I WANT TO OPEN A CLINIC FOR SCD AND TRY TO LET MEN KNOW THIS IS A SAFE PLACE TO COME. BROWN MEN ARE DYING WAAAY TOO YOUNG WHEN THEY DON'T HAVE TO" THE TREATMENT OF OUR COMMUNITY IN ...

advise

naula
  • By naula · Posted October 28, 2013
  • In Raising a child with sickle cell anemia · 13 replies
  • My baby sometimes cries alot,she also gets high temperature so oftenly,her feet and palms also swell and pain alot. please advise me on how to help her out ...

DO YOU KNOW THAT THE NIH IS UNDER INVESTIGATION?

ITESTIFYASICKLECELL
  • By ITESTIFYASICKLECELL · Posted October 27, 2013
  • In In the news · 5 replies
  • OUR COMMUNITY WAS ALLOTTED ABOUT 40 MILLION IN FUNDING AND WE ONLY RECEIVED HALF. WHEN ASKED FOR EXPLANATIONS AS WELL AS PAPERWORK THEY SAID...WE'LL GET BACK TO YOU! JUST FILLIN YOU IN ON YET ANOTHER ...

Hydroxyurea...how does everyone feel about this medicine??

snickerdoodles19
  • By snickerdoodles19 · Posted October 20, 2013
  • In Raising a child with sickle cell anemia · 17 replies
  • My daughter is trying this medication again after I took her off of it for almost a year. Her hemotologist has been persistent on her taking this medication but I took her off of it because it seemed ...

Martin Center Sickle Cell Initiative

Kgjohnson
  • By Kgjohnson · Posted October 16, 2013
  • In Family and friends · 1 reply
  • Wednesday, October 16, 2013 Dear Sickle Cell Community, Martin Center Sickle Cell Initiative is a non-profit organization in Indianapolis that exists to aid and enhance the lives of those affected by ...

"Natural Selection????"

kamerongroup
  • By kamerongroup · Posted October 11, 2013
  • In Treatment · 6 replies
  • "An old falsehood is much more acceptable than a new truth..." We've been sold a pack of lies by the doctors. Think on this. If sickle cell anemia is genetically coded, like the color of our eyes and ...

Alpha Thalassemia Trait and Sickle Cell SS

aamina

Mediport for Sickle cell patients

PCampbell3
  • By PCampbell3 · Posted September 10, 2013
  • In Living with sickle cell anemia · 3 replies
  • Hello all...I hope everyone is well...I am curious to know from others out there on the message board if you have a Medi-port...for those of you hearing about this for the first time a Port is an easily ...

just found out newborn has sickle cell

mykingkayden
  • By mykingkayden · Posted September 9, 2013
  • In Raising a child with sickle cell anemia · 18 replies
  • Hello my name is Patrice and I found out that my two month old son Kayden has sickle cell. I was devastated to get this news because we were unaware that his dad had the trait. I knew I had the trait ...

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