SAMI Holds Annual World Sickle Cell Day Red Umbrella Walk

To celebrate ‘World Sickle Cell Day’ please join Funke Akindele, Yinka Davies, Tosyn Bucknor, 9ice, Meyar, Desmond Elliot, ID Cabasa, Bash, SACO, Funny Bone & a host of others as they show support for people living with sickle cell and to create awareness, the event theme is RED UMBRELLA WALK. It will be followed by a novelty match featuring celebrities, friends of sickle cell and the Lily Stars.

The event which is supported by Theo Waters, Cake Bazaar and Just Amai will also have be free medication for people with sickle cell and Genotype testing for the first 50 people. Sickle Cell affects at least 4m Nigerians, the highest in the world. Join us as we break sickle cell cycle globally #StopSickleCell

Date: 20th June, 2015. Time: 8am. Take off point is Kernel Park, Kernel Street, off Amosu Street, off Bode Thomas Street Surulere, Lagos.

Attendees can register on Eventbrite or follow @samiupdate on Twitter for more details.

The Sickle Cell Advocacy & Management Initiative (SAMI) was established in 2008 to create awareness and educate people on Sickle Cell, as well as provide medical and emotional support to those living with the disorder. Our mission is to employ strategic partnerships with organisations and individuals to reduce the effects of Sickle Cell Anaemia Disorder in society, through awareness, advocacy and support. “Touch A Cell” and XTRA Care free clinic are some of the programs it runs.

This event is powered by SAMI in collaboration with CRIMON BOW NG

Join the Trend #IWalk4SickleCell  Lend us a tweet. Support the fight against Sickle Cell Disorder.

SAMI::::: TOUCH A CELL Dance-a-thon

SAMI; SICKLE CELL ADVOCACY AND MANAGEMENT INITIATIVE presents!!!!!!!!!!!!!!

14 Secondary Schools, 7 youth, 1 event.
 The 2nd edition of  TAC; TOUCH A CELL Dance a thon
Friday Oct 28th @11 a.am.
Tagged AJCITY U FIT DANCE
It features music and dance performances ,short talks on SCD, free genotype testing.


 We need your support

— with Afolabi Adeniji Adekoya, Tosyn Bucknor, Isaac Success, Larry Foreman, Oluwatoyin Akeredolu, Lanre Olayokun, Jazzyray Okpara, 'Ukgreat Esteemed and AlexGreat Akhigbe.

Never Feel Guilty For Being A Parent

Written by a parent of a child with Sickle Cell.
This is something I think needs to be shared with many. It's relevant to more than just the SC community...



Never Feel Guilty For Being A Parent!

Do you feel like sometimes your child’s doctors make you feel bad when u don’t want to try a medicine/procedure or something else they suggest? Do you sometimes feel"guilted" into making decisions for your child that you may not be comfortable with? These are not easy decisions that we are asked to make for our KIDS! Because the doctor's are in an authoritative position, they expect us to go along with whatever they decide, but no one knows our children as we do. Sometimes we need to talk it over with the lord & not just the doctor’s before we make potentially life changing decisions for our kids.
As a parent of a child with sickle cell it is already easy to find yourself consumed & filled with so much guilt.Guilt for every crisis, fever, surgery, transfusion, stick for an IV, missed opportunity, every can't do this, can't do that, every pill, every poke, every cry, every scream, every tear, every fear, every challenge, every heartache, every disappointment, EVERYTHING feels like it is your fault.We DON'T need any extra guilt from outsiders!   God blessed us with these kids because he knew we would be strong enough to help them to get through it all. We can't always stand by on the sidelines and let the doctor’s act as the parent. This is how people end up with unnecessary procedures. We have to constantly keep being advocates for our kids and along the way teach them how to eventually become advocates for themselves.
Never feel guilty for being a parent and taking the time to make the best decision for YOUR child

By: SCD Out of the Darkness & in to the Light

World Sickle Cell Day 2011

Its 4 days to Red Umbrella day Walk for World Sickle Cell Day.

The world Sickle Cell day is celebrated across the globe with special emphasis in African Nations and Asia. The celebrations include a press, media campaigns, music shows, cultural activities, and talk shows and road walks  ……The main goal is to prevent further complications due to sickle cell disease”

Date: 19th June 2011
Venue: Adetokunbo Ademola - Tiamiyu Savage
Time:Kick off 12noon.

Also sponsor an umbrella @1000 Naira by sending to Sickle Cell Adv & Mgt Initiative GTbank 0008294592.

Celebrity Read Africa special edition follows with Ice Prince, Uti Nwanchukwu and more.

Plus free Genotype testing@ terra kulture.

Join us to Break the Silence!!!!!

Support!!!
Follow on twitter @TUKSCF and  @SAMIupdate

Starting a Sickle Cell Movement in Your ‘Hood'

Written by Sickle Cell Warrior on 28 May 2010

For those of you that want to be proactive to start a sickle cell movement in your community, it is not as hard as it seems. There are various avenues, depending on what type of group you want to create. Here are a few steps to get you started.

1. Research whats already in your neighborhood: As I was doing research on the various sickle cell organizations, I realized that sometimes, these groups were mere blocks apart from each other. Instead of serving the same community and becoming territorial,or going in different directions and not reaching a grand destination, combining forces in this instance could be a great asset. So I suggest you to Google what is already in your state or town, and visit the group, to see if you can benefit from them and if they can benefit from you. Some groups were started years ago, and the person at the helm is older and needs a younger person to take the load off. You never know, you might be instrumental in waking up a group that is in your neighborhood.
2. Decide what to do: This is often the hardest part. There is such a great need for every type of function with sickle cell. Will your group focus on  testing, advocacy, fund-raising, activities support, social?…It’s such a long list and can be hard to decide. It’s better to start with one goal, and then branch out from there as you get resources. If you pick up too many things in the beginning, it will be difficult to juggle all the branches, and this can lead to burnout and fatigue. So start with just one or two things, and as your group grows, you can branch out more.
3. Get Organized: You need to decide what the name of your group will be. Where is it located? What is your contact info? What is your mission and vision for the organization? How will you raise money? You need to get flyers for promotion. There are many sites that offer flyers for real cheap, and you can design something on Microsoft Word or Publisher that will fit the bill (if you are computer savvy).
4. Get Online: This is the phase that you develop a website, Facebook page, Myspace, Meetup, Twitter or blog. In this day and age, you need some sort of online presence so that prospective members can easily find out basic info about your group.
5. Get Members: Although you want to start something, you need at least one other person to help you. In this case, your family and friends are your greatest tools. They can help you get the word out about your new group, and even serve to help you plan and organize activities. Some great ideas to get members are to print flyers and put them out in the local hematology offices and family medicine offices. You will have to ask for permission to have your flyers out. You can get cheap flyers online. Put some in church lobbies, volunteer organizations, the blood bank, hair salons, barbershops, the video store etc. and anywhere that you think people with sickle cell might see it. Advertise on Craigslist, Meetup, the PennySaver or anywhere on the internet. Most of the time, it’s word of mouth that gets things moving, so you should design a flyer that talks about your group, with contact info that Aunty Marcie can see at the post office, and tell her niece that has sickle cell. Be sure to create a database of the contact numbers or emails of members that contact you. This way you can stay in touch with them.
6. Plan an event: It could be something simple like a Meet&Greet at a local coffee shop, or a picnic at the park. Notify all the members of the upcoming event. Pick a date and time that will be most conducive to people that have jobs or are in school (usually a weekend afternoon). Start with something inexpensive or free, so that there is no pressure on those that are financially soluble. My first Meet&Greet was a game night that I hosted at my house. We played Taboo and talked, and that was the beginning of a beautiful friendship and support group.
7. Keep Going: From that first meeting, you can decide what direction you want your group to take. Decide who the key members are, and even plan your organizational chart. You can set up some ground rules, and get everyone’s contact information. You can even take it a step further and plan your next meeting, or start throwing ideas around for your next event. Make sure you meet regularly (no less than once a month). Stay in touch with all your members to keep the communal spirit going.
8. Be the Leader: Realize that not everyone is going to have the same purpose and goal as you do, but that is why you are the leader. So play your part: encourage others, build the team, and keep the group alive and active. You should read up on team building ideas and learn how to be a good leader. Be flexible, understanding and open. Learn how to deal with opposing ideas and conflict. Many times, the main thing that fragments a group is conflict form opposing ideas. Try to keep everyone aligned with the goals that were laid out in the first couple of meetings.

Okay, you have no more excuses. Get up, start researching and start your own sickle cell group today. Not tomorrow. TODAY!

WORLD BLOOD DONOR DAY

World Blood Donor Day is day dedicated to "thanking and celebrating voluntary non-remunerated blood donors". It occurs on June 14 every year, the birthday of Karl Landsteiner, the creator of the ABO blood group system, for which he won the Nobel Prize. The first day was held in 2005.

One of the main goals of the World Blood Donor Day is to ensure the availability of 'safe blood' for transfusion.

We at THE UKGREAT SICKLE CELL FOUNDATION join the rest of the world to celebrate this day. We use this medium to urge you to visit the nearest blood bank and donate some of your blood and become a donor today. You don't know, you might be saving the life of someone close to you and even a sickle cell patient who needs a random routine of blood transfusion.

LETS JOIN HANDS AND "FREE A CELL"!!!

BECOME A BLOOD DONOR TODAY!!!

Pain syndromes in sickle cell disease: an update...

Abstract

OBJECTIVE:

Pain has a critical role in the management of sickle cell disease (SCD). Patients may suffer from several pain syndromes, which may be or not may be associated with other clinical complications, such as anemia, organ failures, and infections.

DESIGN:

Data for review were identified by using PubMed to search MEDLINE, limiting the search to abstract/articles in English, Italian, French, and Dutch. The key words pain, sickle cell disease, anemia, hemoglobin, hemoglobinopathy, analgesics, opioids, morphine, acetaminophen, paracetamol, nonsteroidal anti-inflammatory drugs, hematology, and quality of life were variously combined in the title, abstract, and key word search list. The abstract database of most hematological congresses and the bibliographies of most relevant articles were also considered.

RESULTS:

There are two major types of SCD pain: acute and chronic. Sometimes, mixed and neuropathic pain can be also observed. Acute pain is mostly related to vaso-occlusion. Chronic pain may be due to some SCD complications, such as leg ulcers and avascular necrosis.

CONCLUSIONS:

Pain management in the SCD setting needs multidisciplinary approaches, given the several syndromes and the pathogenic mechanisms that are likely involved. Pain management is not standardized and often difficult, so that many patients with SCD are still poorly treated. Further efforts to develop care plans and treatment protocols as well as management guidelines are required.