Support Students With Sickle Cell

The Center for Disease Control (CDC) offer tips for parents and care givers of kids with sickle cell. We need everyone on the team; doctors, teachers, and school administrators. Check out this flyer for more information: CDC Tips for Supporting Students

Also, see CDC's - Sickle Cell Disease link

Sickle Cell Patient Focused Drug Development Meeting

Food and Drug Administration (FDA) Public Meeting

Date:	February 7, 2014
Time:	10 a.m. to 4 p.m.
Location:	FDA White Oak Campus 10903 New Hampshire Ave. Building 31, Room 1503 B and C (Great Room) Silver Spring, MD 20993 (Information about arrival to FDA's White Oak campus1)
Registration:	To register for this meeting, visit: https://patientfocusedsicklecell.eventbrite.com/2. Registration has been extended and will close on February 3, 2014. Webinar Module handouts available here

Sickle Cell Disease & Natural Healing

What do you know about natural or herbal healing?  How can we (people with sickle cell disease) help ourselves with the benefits of herbal remedies?  Mankind has used the benefits of earth's herbal remedies for centuries.

 

Why have we stopped?

 

Tamika Moseley is a mom with sickle cell trait. Her eldest child inherited sickle cell disease from both her and her husband. Rather than succumb to self-pity, self-blame or hopelessness, Tamika has chosen to be pro-active about her fight with this disease. She is fighting on the battlefield of nutrition and natural healing.

  I interviewed Tamika about her new book, Sickle Cell Natural Healing:

Q.  Give us some background about why you wrote this book. 

A.  I wrote this book because my oldest son has sickle cell disease, my youngest son and husband both has SC disease which is a milder form of the disease.  At the age of 1yrs old, my oldest was hospitalized every 3-4 months with sickle cell crisis and he also received 2 blood transfusions that same year.  I had to choose another avenue for my family because what was happening obviously wasn't working. I started researching natural herbs and started treating him, today it's been 3 years and 8 months and my son has not had a sickle cell crisis, nor any complications related to sickle cell.

Q.  What did you know about sickle cell disease prior to writing this book? 

A.  All I knew about sickle cell disease is it is a very painful disease and could be fatal.  And people with the trait like myself could never have any issues.  Which later in life I found out not to be true, people with the trait can have problems.  I almost died after my 3rd child.

Q.  What have you learned? 

A.  I have learned so much about this disease, how a person doesn't make enough red blood cells to supply oxygen throughout the body and in turns how dangerous this can be; leading to organ damage, strokes and a host of other complications as well.  that sickle cell disease can be controlled with herbs.  Herbs have been around since the beginning of time and is good for so many things, herbs can heal so many sicknesses and diseases, we first have to have an open mind to the healing power of herbs.

Q.  How can this book help others?

A.  This book can help others be aware that there are other avenues to take when dealing with sickle cell.  I wanted to tell my story because at one time; I was that person in and out of the ER on a regular basis with my son; but not anymore.   I was that person having pain crisis in both legs and both arms and near death.  I understand how hurtful, emotional, heartbreaking this is when you have a loved one suffering and there is nothing you can do about it.  I want people to know that they don't have to suffer, they don't have to be in pain, they can live healthy and happy lives with sickle cell.  Bringing awareness to people globally that herbs can minimize crisis and hospital visits.  Also minimize the number of deaths.

Q.  What is the one thing you want readers to remember? 

A.  Always remember that God grants us the serenity to accept the things we cannot change and to have the courage to change the things we can.  We have to educate ourselves and have know that knowledge is power, but only if we apply it.

Q.  What are you doing to bring awareness to sickle cell disease? 

A.  I have teamed up with  Dr Charlie Ware, a homeopathic doctor in Hollywood, FL (he treats patients with sickle cell disease with herbs) and has had great success!!!  We both are passion about this disease and our goal is to educate the world globally.  This disease has been around for 100 years and it's time for us to take back our lives.  We will be at the Jerk Festival in Sunrise, FLNovember 10th promoting awareness and I will have my book available to sale.

Q.  How can we purchase this book?

A. The book will officially be available November 4th.  Pre orders will begin 10/4/2013 through my website:http://www.ssnaturalhealing.com/ (site will be up and ready for pre orders on 10/4/2013) for International request: please email info@ssnaturalhealing.com and include your name, address, city/country/contact number and how many copies requesting and we will get back with you.

Tamika's Contact information: www.ssnaturalhealing.com 
https://www.facebook.com/nicolnaturals

 

 

 

 

 

Sickle Cell Awareness Month - Globally

Global Sickle Cell Awareness

September is the best time of year. The weather starts to cool down as the earth moves away from the sun's summer heat. And, it is also Sickle Cell Awareness Month. Recently, I'm overwhelmed by the many activities related to this event. People are walking, talking, teaching, and even preaching about sickle cell disease this month.

         
My heart is very glad.      

However, I have been looking for something else. I've been looking for global awareness, global acknowledgement and global assistance for people with sickle cell disease. 

Guess what? I think I've found it.

There is a health care assessment "toolkit" created by PHG Foundation for countries to evaluate their health care needs, as it relates various diseases. Thankfully, they have included sickle cell disease. 

The PHG Foundation's Toolkit for Health Needs Assessment in Congenital Disorders has “country specific” data from sources like the World Health Organization (WHO). 

PHG's ultimate goal in developing the toolkit is to improve health outcomes of people with congenital disorders and reduce the burden of these disorders.

This toolkit is useful in many ways. Health administrators, health agencies, health departments, or anyone who determines healthcare policy and funding decisions, can use this tool useful in assessing current and planning future health care strategy needs.

If you are a healthcare professional, policy maker or health administrator please pass this information on to the people who make health care assessment and funding decisions in your country. 

Once they complete this assessment, they just might find justification for providing better health care for people with sickle cell disease.
 

Find out more information:

PHG Health Assessment Toolkit ~

PHG Foundation ~

World Health Organization (WHO) ~

~ WHO Chronic Disease & Health promotion 

  ~ WHO Genetic Diseases  

A Mother’s Love – Selina’s Battle with Sickle Cell

Whenever I travel to a new city, I look for sickle cell disease advocates in the area. I like to make contact and invite them to events that I’m participating in. Recently, I was visiting San Diego, California and searched for local sickle cell contacts.  I found one.

During my search, I came across an article about Selina Harris.  Selina is a child in San Diego similar to other children her age with one exception, she is living with sickle cell disease. Selina is treated at Rady Children’s Hospital of San Diego, a sickle cell center.

 In this article, I discovered Selina’s courage, strength and perseverance AND the love of her mother Yolanda.

I called Yolanda to connect and find out more about Selina. I was surprised to find out the story I was looking for was Selina AND Yolanda's story. Yolanda represented to me every parent who supports and fights for their children with a medical challenge. Yolanda is a caregiver, advocate, organizer and parent with the unending love for her child & all children living with sickle cell disease.

As an everyday hero, Yolanda goes about her everyday responsibility of making sure Selina lives a life of wellness. She also organizes events to educate her community about sickle cell disease. 

 

 

1st Annual Walk for Sickle Cell Anemia 2013

 



We can always recognize an everyday hero by what they give to the world. Yolanda and Selina Harris gave me so much encouragement.  I’m encouraged by parents teaching their children to be self-advocates for their health.  I’m encouraged that parents are speaking up to medical professionals reminding them that “we”, people living with sickle cell disease, are “living” and should be treated with care, respect & dignity.  I’m encouraged that people with sickle cell disease are being pro-active and educated about their treatment options.  I'm encouraged by Selina and Yolanda.

Yolanda is not unique. There are sickle cell heroes throughout the world advocating, marching, organizing, teaching, giving, and sharing their time, talent and resources.

Today, I’m taking notice of just one set of heroes, Selina & Yolanda Harris. Good job!!!!!!