Judy Johnson – Living With Sickle Cell Disease

Judy Johnson Author

Judy Johnson Author

We are delighted to have a blog contribution by Judy Johnson relating to her recently published book on living with sickle cell disease. Here is what Judy says:

Living With Sickle Cell Disease: The Struggle to Survive was a book I absolutely had to write. Prompting me to undertake such a daunting project was finally having had it with being treated as less than a person whenever I showed up at an emergency room.  More times than not, I would cry in extreme pain, only to have medical personnel tell me to “cut out the drama.”  I also got tired of being viewed as a drug addict seeking a fix.

While this book serves as a memoir about my life with sickle cell disease, I also intend for Living With Sickle Cell Disease to be my message to doctors and nurses that they would do well to treat sickle cell patients not only with medicines, but also with compassion.

I also wrote Living With Sickle Cell Disease, to tell readers how I was able to attend college, teach school and raise a daughter by myself. As I say on my website, www.judygrayjohnson.com, I hope my memoir advances conversation on sickle cell disease, and in telling others who suffer from sickle cell and other chronic illnesses that they too can rise above the challenges their own bodies throw at them.

So far, the early reviews have been positive. Several people who have read the book have told me it is powerful and will tell their friends. One of the first endorsements came from a 90-year-old man who picked up a galley copy and read it from cover to cover in one sitting. He said, “I couldn’t put it down.”

I sincerely hope that others who read Living with Sickle Cell Disease will not “put it down.” I also pray that they come away with a new appreciation for what it is like to live with this little-understood blood disorder.

Living With Sickle Cell Disease

by Judy Gray Johnson & Leroy Williams, Jr.

Details of how to purchase the book are available on Judy’s website: http://www.judygrayjohnson.com/ (accessed 4th June 2012).

(Update November 2017 – I note Judy’s website is no longer available. You can purchase her book by Amazon: https://www.amazon.com/Living-Sickle-Cell-Disease-Struggle/dp/1493597485).

 

Student created OER – genetic inheritance

Nick Machon OER

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Nick Machon OER
Genetics interactive game produced by final year computer science student Nick Machon

Content Author:
Nick Machon – wrote all content and created Flash animation

Level:
All learners

OER Features:
Interactive animations

OER Description:
Some of my best experiences working on OER projects is when students offer to be involved. Nick was computer science final year student looking for a project, and undertook the challenging area of grappling with genetic inheritance to produce a series of interactive Flash animations. He was a pleasure to work with – very organised and hard working, and these resources have been used a lot on open days and out reach events with schools and colleges. Unfortunately now, Flash isn’t supported on the web and it is no longer easy to play these resources. This post is therefore in recognition of his hard work.

 

Sickle Cell. Disease or Disability?

Vanetta's Blog Post

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Hi, my name is Vanetta, I’m 23 and I have Sickle Cell Anaemia.

Vanetta's Blog Post

Writing that sentence just felt really weird, because whenever I introduce myself, that having Sickle Cell would be the last thing on my mind to tell someone. Not because I’m ashamed or afraid of what others will think of me, but simply because I don’t feel I am defined by it.

That is why the first time heard the word ‘Sickler’ used for someone with SCD (Sickle Cell Disease) a couple of years ago, I felt like someone had deeply insulted me.

I am NOT a ‘Sickler’ – I have SCD just like you have two eyes!

Okay, maybe that’s taking it a little far, seeing that your eyes will hopefully never hurt as much as my pain crises, but you know what I’m trying to say, right?

Or do you?

Because the way I see it is: it’s a chronic illness yes, but it is not constantly acute, so I live with it as ‘normally’ as I can; it may trip me up like many other things in life, but it WILL NOT hold me down!

But then I wonder do I only have this view of SCD, because I have been truly blessed as to how often and severe my crises are? Because the other day a friend was telling me that her relative, a grown male with SCD, is making preparations for his soon anticipated death, following severe bouts of crises which have left his liver totally damaged. He just had what’s expected to be his last family holiday with his wife and children and here I am saying I practically forget I have SCD until my annual major crisis occurs or my body softly start throbbing after a particularly ‘reckless’ day without enough sleep, drink or meds. And then on the other end of the spectrum are stories of cousins and family friends who haven’t had crises in 5, 10, 15 years!

What is it with SCD that makes it possible to see such wide ranges in experiencing it on a day-to-day basis? Is it just based on the medical treatment and information one has access to? Or the social support? Or is it what we personally do after having received the treatment, information and support?

What do you think of it? Is it a disease or a disability? Does it just (severely) ‘dis-ease’ you from time to time or does it ‘dis-able’ you completely? And what do you think is the deciding element in causing the difference?

Vanetta is a student at De Montfort University involved in the SCOOTER project.

Marvellette founder dies

Marvalettes

The death of Marvellette reminds us of an earlier sickle cell disease death. Today, 28th January, the BBC News Service announced the death of Gladys Horton, founder and lead singer of the 1960’s all-female Mowtown band, The Marvellettes on 26th January at the age of 66. The Marvelletes are best remembered for their 1961 number one hit “Please Mister Postman”, later covered by both The Carpenters and The Beatles.

THE MARVELETTES
“Please Mr. Postman”

The Marvelettes in a 1964 promotional photo: (clockwise from left) Gladys Horton, Katherine Anderson, Georgeanna Tillman and Wanda Young.

Marvalettes
Marvellettes photograph – Tomasupten, http://upload.wikimedia.org/wikipedia/en/6/61/Marvelettes.jpg

(Source: Tomasupten, http://upload.wikimedia.org/wikipedia/en/6/61/Marvelettes.jpg)

What is less well known is that one of the backing singers and founding members of the group was Georgeanna Tillman, who married Billy Winter of male Mowtown band The Contours in 1963. Georgeanna is reported to have had both sickle cell anaemia and lupus. Complications of her illnesses are reported to have been behind her stopping touring in 1965 and subsequently leaving the group for good. She is variously reported to have died from complications of her sickle cell anaemia/lupus on January 6th 1980, aged only 36.

Types of OER?

SCOOTER Teaching Resources

What type of teaching resources are we going to produce?

SCOOTER will release onto the website a significant volume of teaching resources in the form of open educational resources (OERs) to meet the needs of the science and healthcare communities, as illustrated in Figure 1.

SCOOTER Teaching Resources

These teaching resources might be in the form of learning objects – that is a bite-sized chunk of learning material that might include an animation with voice over to explain a scientific concept. There might be a short quiz to test the user’s understanding. OER will also include video, photographs and drawings, not just of benefit to education but research and more specialist requirements of the healthcare professions.

Sickle Cell and Thalassemia are a fascinating medical area and will serve as focus from which to release materials mainly in biomedical science and health, and also reaching arts, humanities, law and technology.

Who is producing these resources?

Much of this material already exists with academic staff in the Faculty of Health and Life Sciences at De Montfort University. Staff in other Faculties including Business and Law, Art and Design and Humanities are also contributing material relevant from their area. In the Faculty of Technology we have a final year “Gaming Technology” project student developing a diagnostic game on anaemia. Students also from Art and Design are producing paintings of the human body in relation to the subject, helping us see science through the eyes of an artist.

Discussions are underway with commercial organisations such as 3M and Novartis who have expressed an interest in contributing resources. The UK Sickle Cell Society have kindly offered us the opportunity to search their archives for suitable material. The NHS Screening Service have offered resources. Two Midlands Hospitals – Birmingham and Leicester Royal Infirmary have offered laboratory data, histological images and even a book chapter.

Why do we need these resources?

The Government is keen to support STEM subject education (Science, Technology, Engineering and Mathematics), and the SCOOTER resources will provide high quality educational materials to support universities in achieving this goal. In addition, the Government also is keen to promote genetics education within the healthcare sector – to “incorporate genetics education into professional education at all levels” (1) , so, SCOOTER will involve relevant healthcare sector stakeholders and use specialist staff contributors including genetics, midwifery and nursing.

The final need that SCOOTER addresses is the requirement for more educational materials in the social aspects of healthcare in response to the changing global scene(2). SCOOTER will meet these needs and release OERs on social aspects of health. SCOOTER will link arts to sciences as a means of reaching new audiences, an approach used by the Wellcome Trust. SCOOTER also bridges technology and law, providing even wider potential interest.

Join the SCOOTER community!

Please subscribe to our Forum and follow us through Twitter and Facebook. We are looking to build a community of users, not just resource contributors but people who wish to use the resources, and those of you perhaps interested in more formally evaluating and reviewing them.

References

  • Department of Health 2008. “Our Inheritance, Our Future”.
  • World Health Organisation 2006. Sickle Cell Report.