Antigua and Barbuda Sickle Cell Association

Tropical Adventures donates

Tropical Adventures has supported the Antigua and Barbuda Sickle Cell Association for the longest while. Here is their latest gift to our patients:

Following CIBC’s Plant-a-Tree Day at our Sheltered Workshop earlier this year, Tropical Adventures has pledged to take care of the yard maintenance for us. Taking care of the grounds is not an easy feat. But those little trees are thriving, and we want to keep it that way! We picked the first sugar apples last week…

Thank you. We are so grateful to have you in our corner!

World Sickle Cell Day 2024

September 19th is World Sickle Cell Day, bringing attention to millions of persons around the globe who live with this challenging condition. The Sickle Cell Association of Antigua and Barbuda (SCAAB) has marked the occasion by donating two special pieces of art to the Sir Lester Bird Medical Centre:

The winning pieces of the recent UN art competition centered around the protection of Human Rights. Under the motto “Pain Relief is a Basic Human Right”, the images advocate for adequate access to pain relief for everyone – Sickle Cell patients, cancer and hospice patients, and all other patients suffering from a severe,
painful condition.

AUA Students Support Sickle Cell

We want to say a big, huge, tremendous THANK YOU to our AUA students. Again? Definitely! They have been supporting Sickle Cell for years now, and their dedication and steadfastness is most impressive.

Help can come in big and in small ways and in any way in between. We appreciate all of it.

Med School is demanding; there is barely any free time, yet our students have raised awareness, done blood drives, bake sales and other fundraisers, and provided assistance whenever possible.

As the semester has ended and students go home for the summer, we want them to know that we are very proud of them.

CIBC Beautifies Sickle Cell Workshop

This post concludes a remarkable project initiated and sponsored by CIBC Caribbean. Last year, we were lucky enough to be selected for CIBC Caribbean’s Adopt-a-cause program (https://www.nicefmradio.com/cibc-staff-making-a-difference/ ).

The Sickle Cell Workshop needed a number of repairs, which were carried out thanks to CIBC. In February, this was rounded off with a tree-planting day. CIBC employees and management, patients, AUA students, and supporters came and planted fruit trees on the premises, the goal being to provide for our patients in
times to come.

Mrs. James-Williams, CIBC’s country head, decided there and then to sponsor a face-lift for the workshop. Painting has just been finished and the workshop has never looked this lovely and inviting. It’s beautiful. We all know that our surroundings contribute to our well-being and frame of mind. The new look makes a vast difference.

Our heartfelt gratitude goes to CIBC and everyone who was and is involved in keeping the Sickle Cell Workshop a haven for our patients.

A special thanks to the volunteers from CIBC FirstCaribbean International Bank and the American University of Antigua who came out to support the Antigua and Barbuda Sickle Cell Association this week!

CIBC staff making a difference Nice FM 104.3 > Blog > Local News > CIBC staff making a difference Local News CIBC staff making a difference Last updated: 2024/02/27 at 10:36 PM Nice FM Share 3 Min Read CIBC staff take a break from planting trees at the Sickle Cell Association Workshop at Holberton Hospital. SHARE St. John’s, An...

The Sickle Cell Association has won the United Nations’ Art Competition themed "Mainstreaming the protection of Human Rights towards the accelerated achievement of the SGDs". We are thrilled and grateful to have been invited to participate.

Under the motto “Pain relief is a basic Human Right”, we submitted two pieces which were later merged and adapted into posters. One of our entries is a pastel drawing of two young women comforting each other. The other is a photo collage made possible by the combined effort of our patients and supporters. They came together in an unprecedented show of unity, spelling out the word “PAIN” to present their cause. Special thanks to Joe Martin from Photogenesis who climbed on the roof to take the pictures!

The posters are now displayed at the airport, the UN building on
Independence Avenue, at Antigua Recreation Grounds and, thanks to Mr. Wilkins, also on the electronic billboard on Old Parham Road. We are ever so grateful for this opportunity to give our patients a voice.

We made the images available to other Sickle Cell associations internationally, where they were exceedingly well received. Let us hope they will help to make positive changes.

Mandala colouring books created by Sickle Cell patients

Mandalas are well-known for channeling relaxation and settling the mind. Adult colouring books using classic and modern versions of this traditional art are popular worldwide. They promote harmony and tranquility, something all of us need in our fast-paced world.

We originally introduced Mandala colouring to our patients as an add-on means for pain management – focusing the mind away from the pain does help at least during milder painful episodes.
Our workshop patients have now created an original Mandala colouring book centered around Antiguan themes. It’s unique, it’s beautiful and something to be proud of.

The first copies are now for sale at Best of Books. A big thank you to Paperclips who printed the books, and to Best of Books for carrying them!

We are exceedingly grateful to Government House for facilitating the Sickle Cell Association’s silent auction last month. Their beautiful, elegant ambiance and attention to detail made the evening special and memorable.

As a token of our appreciation, we gifted Government House with one of the most impressive works on display: a beautiful table runner, with Antigua’s coat of arms hand-embroidered on both ends. The patient who created it has become a true artist with the embroidery needle, well deserving of this acknowledgement.

On behalf of our patients, sponsors and guests, thank you!

Under the distinguished patronage of Their Excellencies, Sir Rodney Williams and Lady Williams, the Sickle Cell Association hosted a very special event: a fundraising auction at Government House, showcasing the handcrafted work of our Sheltered Workshop patients.

It was a truly enjoyable, lovely evening. It is humbling and heartwarming that a few guests actually came from abroad to be there. We are very proud of our workshop patients and happy for the recognition their work received that night. Our guests had a great time and left with some beautiful, handcrafted pieces.

This fundraising auction was also the start of our new sponsorship programme, which you can read more about on our website (link below).

We are exceedingly grateful to Government House for facilitating the Sickle Cell Association’s silent auction. A big thank you to Brydens, who donated the wine bar, and to Paperclips for their immense help and patience with the printing of our donor prospectus. Thank you to the artists who donated some of the artwork and to the AUA students who assisted during the event. And finally, thank you to Mill Reef Fund, without whose recurrent grant the workshop would not exist in the first place!

http://sicklecellantigua.org/donor-prospectus/

Newborn Screening for Sickle Cell: 2 Years in Review

Our newborn screening has been up and running for over 2 years now.

Dr. Shivon Belle-Jarvis, Head of SLBMC’s Pediatric Department, has worked tirelessly to put the results together in a study titled “Sickle Cell Disease Newborn Screening – An Audit of a Twin Island State Pilot Program”. The article has now been published in the International Journal of Neonatal Screening.

Congratulations, Dr. Belle!

The most important findings are:

1. The rate of babies born with Sickle Cell Disease (SCD) in Antigua and Barbuda is 4.5 in 1000 (4-5 new patients with SCD per year).

2. The incidence (i.e. the number of NEW cases) of the classic Sickle Cell Trait HbAS was 9-10 in 100 newborns. The incidence of the HbC trait (HbAC) was 4-5 in 100. The incidence of traits HbSS and HbSC together (whose combination results in SCD) is around 14 in 100 newborns.

3. These findings are consistent with existing figures of Sickle Cell Trait in Antigua, which is 18 in 100 persons (or 1 in 5-6 persons).

4. Only 3% of fathers were aware of their sickle cell status.

These findings prove that newborn screening is necessary and valuable: Babies with SCD receive early care which gives them a better chance of survival, while families with SCD and Sickle Cell Trait receive counseling, which helps to decrease the number of newborns with SCD in the future.

The findings also show that public awareness still needs a lot more work, especially when it comes to testing our men!

Thank you, Dr. Belle, for your work on this study.

Read the full article here: https://www.mdpi.com/2409-515X/9/1/14
PDF Version: https://www.mdpi.com/2409-515X/9/1/14/pdf

ABSCA thanks the staff at Maternity and Paediatrics for their unwavering dedication, CAREST for their steadfast support, and AUA for sponsoring the newborn screening from day one.

Image: Dr. Shivon Belle Jarvis, B.Med.Sci(Hons), M.B.B.S, D.M Paediatrics, MSc. Neonatology (merit), Head Paediatric Department Sir Lester Bird Medical Centre

World Sickle Cell Day 2022

September 19th. It’s World Sickle Cell Day again. Of course, for us, every day is Sickle Cell Day; that goes without saying. But this day is a chance to bring attention to our cause - to the challenges which our patients face and to the many ways in which help can be offered.

So, we would like to introduce our latest project. This is how it came about:

One of our Antiguan Sickle Cell warriors went abroad, determined to pursue a higher education. In spite of severe setbacks and serious illness, running on sheer willpower alone (or so it seems at times), he is doing what he set out to do.

During that first, horrific year of college, he was introduced to the Candice’s Sickle Cell Fund (https://www.candicessicklecellfund.org/). He is now a proud and deserving recipient of a scholarship sponsored by this fund.

Candice’s Sickle Cell Fund is a truly impressive organization. Once you have a look at their website, you’ll agree. Amongst many other initiatives, they sponsor a program utilizing Uber Eats (“Order food to your door”).

We all know the following situation: a patient has just been discharged from hospital but is still not well enough to cook for himself/ herself or the family. Or a child is admitted, Mummy spends day and night at the bedside and is exhausted. Or a patient is in crisis, whether at home or in the Emergency Room, and can’t fix himself a meal or has nothing to eat. Candice’s Sickle Cell Fund sponsors warm meals delivered to the patient / family via Uber transportation.

We in Antigua don’t have Ubers. However, we have a network of caring people, and we have The Soup Kitchen. So we tweaked the Uber Eats idea a little. Once we know of a patient in need of this kind of assistance, we let a dedicated driver collect a warm meal from The Soup Kitchen and let her deliver it at no cost to the patient.

We named the program J.o.-a.n.'s., in memory of one of our patients. The acronym stands for "Jointly offering a nutritious solution". The program is young and we are still smoothing out a few kinks, but it's working and it’s good. Thank you to all who make this possible!

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Check out Shaun's story: Antigua's first patient to undergo stem cell therapy for sickle cell disease!

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We at the Sickle Cell Association want to share something with you that reflects beautifully on our cause and our association. On Thursday, our President, Dr. Edda Hadeed, was awarded the Governor General's Faithful and Meritorious Service Award for "faithful services in public health".

Dr. Hadeed says: "I feel very honoured to have received this award. What I love about this is, that it shows that Sickle Cell Disease is being acknowledged. It's like saying Ýes, what you do is necessary and important.' And let's face it, we have achieved quite a bit already. I want to thank all of you who help and contribute to our work, each in his or her own way. I could not do it without you."

Christmas at the Sickle Cell Workshop

We have not posted anything in quite some time – we’ve been busy! Our pilot project “Sheltered Workshop” for Sickle Cell patients with a severe course of illness (see our last post for details) has turned out to be one of the best projects we have ever done. It is, without a doubt, a success, and we want to keep it going.

Our patients have shown dedication, resilience and enthusiasm. They have tried their hands at various crafts, and the talent which surfaced, is astounding. We are so proud of all of them. They have recently produced their first products for sale: beautiful, handmade Christmas cards and vibrant, unique Christmas displays. Please have a look at the photos. A lot of love and work has gone in there, and the result speaks for itself.

The cards are on sale under the logo “Against all odds” at various places around the island. We can take a limited number of orders for Christmas displays. If you would like to order one, please contact Dr. Hadeed’s office at 462 9499.

World Sickle Cell Day 2021

We at the Antigua and Barbuda Sickle Cell Association think World Sickle Cell Day is the perfect time to present our new venture.

Thanks to kind-hearted sponsors like Mill Reef Fund, AUA and several compassionate, generous individuals who donated time, effort, money and brainstorming, our pilot project "Sheltered Workshop for Sickle Cell Patients" is now a reality.

This intervention is aimed at a group of our patients who have been hit the hardest by their disease. Every disease has a spectrum - asthma can be mild, moderate or devastating. The same applies to SCD. While some of our patients are doing beautifully well, others do not, no matter how hard we try. We have seasoned patients who are disabled according to the criteria set out in the Disability Act, and we have several young people who are sick too often to hold on to a job. Often, this results in depression, social isolation, financial hardship, hopelessness and restricted uptake of available care. We don't need to elaborate on these challenges - all of you know what we are talking about.

Our idea was to create a safe, positive environment where patients can explore and learn new skills without fear of being dismissed due to frequent absence.

For this pilot project, we opened the doors of the Sickle Cell Clinic (which is still not up and running, but that's another story for another day) on three days a week for six patients. Transportation to and from their homes is being provided (thank you, ABDF, for the first month!). Patients are at the clinic from 10 am until 4 pm and receive a token pocket money of 15.00 EC$ for every day attended, which they may use to purchase their own supplies, if they want to continue at home, or which may simply help with groceries.

A "house mother" is supervising. Lunch is provided, as are all materials needed to learn various crafts: sewing and paper crafts, sculpting, drawing, pyrography, light gardening. Greeting cards, gift tags, Christmas ornaments, boutonnières and corsages, paper weights - the possibilities are endless. All these are items which can eventually be sold and create a modest income, once the patients have become proficient.

In addition, we have regular sessions teaching and practicing mindful breathing and will eventually start brief seminars about various aspects of SCD in order to improve self-care.

All this is very new. We started on June 9th 2021 with Mandala colouring books and painting-by-numbers, both unthreatening, relaxing and satisfying. We moved on to creating greeting cards and paper-mache. The participants’ reactions have been overwhelming, heartwarming and humbling.

Our patients, some of them struggling with depression, loved it from Day One. They look forward to each session, to each other’s company, to doing something that has visible results. They look out for each other, encourage each other. If one doesn’t feel well, they are all there to reassure and soothe. Since it’s a some-day-to-be clinic, we have two beds, which can be used when needed. There is no pressure, no demand to perform, just opportunities, positive vibes and understanding.

Not only did patients ask to take their Mandala colouring books home; it turns out that they hate missing a day. As a patient in a good amount of pain said: “I’m still coming tomorrow. I’ll just lie down there; I enjoy the company. And it’s much better than being in pain alone at home.”

When we planned this project, we were hoping for all the obvious benefits, but this last bit? We did not expect that. We could not possibly be more pleased.

AUA students support Sickle Cell cause

“To say that this is awesome would be an understatement”.

This is just one of the reactions to an incredibly generous donation from AUA’s students. The future physicians presented our Sickle Cell Association with a gift that left us speechless.

It goes without saying that we appreciate each and every help coming our way, no matter how small it might be. But this? 30,000.00 US dollars? This is unbelievable, and to be honest, we are all still a bit in shock. We can do so much good with this, and it definitely takes us a huge step closer to starting the clinic.

Also, let’s acknowledge that it’s students who managed this feat. Students. Not a bank or corporate business. It gives us hope for the next generation of physicians – they care. It also gives us hope for the future of our patients, if they are lucky enough to be managed by doctors like this. And, it restores faith in humanity on the whole, doesn’t it?

Covid-19 Vaccination Seminar

The Education Subcommittee for the National Coordinating Committee on the Covid-19 vaccination programme is pleased to facilitate an educational session for Members of the Sickle Cell Association this coming Monday, 8th March, 2021 at 2:30pm.

The presenter is Dr Shivon Belle-Jarvis, head of Pediatrics at the Mount St. John's Medical Centre. Kindly see the Zoom credentials below.

Time: Mar 8, 2021 02:30 PM Puerto Rico

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