Spotlight on YOU

Sickle Journal

Jonathan Ssetumba

Our first Online Sicke Journal writter, please make sure your check out his profile and diary

Sickel Journal: I would like some of you to volunteer to write a regular column, about your experiences with Sickle Cell & Thalassaemia these short diary extracts will be published on our website regularly. This is your chance to speak out, tell other people who do and don't suffer from Sickle Cell and Thalassaemia what you have been through or are going through now.

I would like you to share your good times and your bad, because life is full of both and we like to be as real as possible. If you would like to write a Sickle Journal contact me at the MSCTG office or email naheed@msctg.org.uk

You dont have to be a Sickle Cell Sufferer or a Thalassaemia sufferer to write a Sickle Journal. We would like to hear from you if you are a carer, a family member or a friend too.

 

 

 

 

 

 

Sickle Spotlight Articles

We are giving you the opportunity to write articles for us. These can be one off articles and (within reason) can be about anything. These will be published in the “Spotlight” section of this Sickle Spotlight Online Magazine.

This is your opportunity to be heard.

Our most recent Sickle Spotlight's is on Vernon Buckle the father of a Sickle Cell Sufferer. If you would like to write for Sickle Spotlight Magazine contacts us now.

 

Spot Light on a volunteer : Allana

(December 2006)

Hi my name is Allana and I have been volunteering for Merton Sickle Cell Thalassaemia Group (MSCTG), for a number of weeks now. The overall aim of the tasks is to assist the Project Manager by providing clerical and administrative support; however, tasks can often take on varied forms. For example, there are a lot of meetings about projects and discussing what activity we should plan to achieve an objective, such as increasing support, advice and information on Sickle Cell disorders and Thalassaemia. Therefore I've done work that has touched on lots of issues, for instance services for Sickle Cell and Thalassaemia sufferers and carers; which involve benefits, services for children, transport and finance.

The best thing about volunteering is that my involvement makes a difference and something gets done to help the community. For example, by helping to ensure the smooth running of welfare benefit support, and through negotiating with the right people, those on low incomes more often than not will get what they are entitled to.

I think the most challenging thing charities like MSCTG face is acquiring funding and spending funds accordingly, as even though funders help towards developing goals of organisations, they have high expectations and often work needs to be completed in very tight timescales. There are benefits though : decisions get made, and the work is varied and interesting.

I would advise anyone to apply to volunteer for MSCTG, as it offers opportunities to better the local community, as well as offering training courses in many areas, not to mention the numerous invites you get from various organisations! (I was invited to the launch of the BME strategic plan for Merton.)

MSCTG is all about making progress and developing. So overall, to be part of the project is a rewarding experience.

 

 

Spot light on Remi Al-Ameen- London ( September 2005)

 

Remi Al-Ameen, Who am I? How does sickle affect me? How do I manage life, with Sickle Cell Anaemia? When I sat down to consider what someone might want to know when reading this spotlight, the above questions came to mind. Therefore I felt the best possible thing for me to do would be to answer them as briefly and directly as possible and without too much moaning.

First off then who am I? My name is Remi Al-Ameen and for the most part I try to live up to my name which when translated means friend of God, the trustworthy and the faithful. Although nobody is perfect, I am a trustworthy and faithful son of an Evangelical Christian mother and a strictly devout Muslim father. My age is a mystery, lets just say I am in my thirties and my age bothers me a little.

Most people know me through my work within the community. On various projects, in schools, college and most importantly the Youth Centre which has been running for a year and half now. I run a small charity “Merton Youth Inclusion Trust” . Actually this is a good point at which to start answering the question How does Sickle affect me? Sickle Cell has been around as far back as I can remember and since the day the doctors discovered that me and sickle were to be friends for life, it has been a roller coaster ride which has had some highs and for the most part very many low points.

Sickle hasn't done me any favours, in the physical department not that I'm not good looking or anything. Just that I knew from very early on that all this sickle stuff was going to mean curtains for severe physical exercise, in other words I wasn't going to be the next Daley Thompson or Linford Christie. Remi with a condition that at the time only a few people knew about. That is what I was going to be and nothing more. The Medical fraternity have a way of reminding you that this was all you would be, however their words have had the opposite effect and in essence this has given me a sense of drive which has lasted the whole of my life.

In life we all face various obstacles some greater than others. My Sickle has given me the drive to do some innovative & quite remarkable things. Moving at a fast pace wondering whether my life would end tomorrow or not, has had its setbacks. Some people cant keep up with my “it should have been done yesterday” mentality. Others congratulate me on my drive, persistence and determination. The only way to describe it is that it feels as if you are playing a board game and just before you get to the end the dice, pieces and the board will all disappear so you better play fast or else you will miss out.

How do I manage life, with Sickle Cell Anaemia?

Having spoken about this at length, my understanding is that as Sicklers we need to embrace the way we live, understand our limitations and take it easy because we will all die someday. Beyond this, with Sickle you take every day as it comes, we all know that we shouldn't be cold, stressed or dehydrated. But we still get ourselves into it.

Do make sure that you enjoy every precious moment of this life and Yeah do things that will precipitate the cold, stress and dehydration!! I do frequently. This is the only way I cope with things. As for painkilling, until they invent a painkiller that doesn't make you feel like a junkie, and is as natural and homeopathic as some of the remedies out there I will be managing the minor crises with mind control and the major crises at hospital.

 

 

Spot light on Vernon Buckle - London ( March 2005)

Community Ambassador Champion

Vernon Buckle is a member of Merton Sickle Cell & Thalassaemia Group as the father of a Sickle Cell sufferer. We at the MSCTG would like to congratulate Vernon on his wonderful achievement of receiving the award of a Community Ambassador Champion and would like to thank him for appearing in our Sickle Spotlight Magazine.

Vernon is pictured below with Her Honorable. Mrs. Justice Dobbs (the  first black High Court judge). Lord Falconer of Thoroton, Secretary of State for Constitutional Affairs and Lord Chancellor, signed his certificate. Vernon was deeply touched to be nominated and will forever cherish his trophy. Please take the time to read Vernon's Letter below.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Encouraging Black People to be involved in the Criminal Justice System

A Magistrate is an honorable citizen, representing the citizens in the legal framework.

The Magistrate Shadowing Scheme organised by Operation Black Vote and the Department of Constitutional Affairs, allows Black and other ethnic minority communities to become actively involved in examining the work of local magistrates and applying to sit on the bench. One will learn about Law court proceedings/ penalties/charges and sentences as well as Licensing Laws

- there is a very thorough training offered. Black people should be represented in all key areas of UK Governance and this is a good opportunity

- to ensure it works, be part of it. Offer your unequivocal support with a hands-on approach to problem solving.

I was deeply touched to be nominated as Community Ambassador 2004 and will forever cherish my trophy. I had organised talks, which provided a platform to encourage applications to the magistracy. My aim was to encourage the Ethnic Black Minority members of English society to consider the criminal justice system and improve their confidence by maintaining racial harmony, detaching assertion from aggression and establishing fair justice.

Ethnic Black Minority members of English society were advised to be law-abiding citizens as well as to instill civility and decorum within the youth.

My training and background with the law have been a great asset, as it helped me analyse and evaluate matters clearly. In my community work, I generally try to operate and advise within the framework of the Race Relations (Amendment) Act 2000 and equal opportunities policies and provide an anti discrimination toolkit to help colleagues. I also found Schedules 1, Articles 2, 9, 10, 14 and 17 of the Human Rights Act 1998 very useful. My aims were to change attitudes, practices that prove detrimental to the advancement of people of colour . These aims were met by my advising on policy issues and raising awareness of any factors that affect them as well as providing a forum for debate and discussions on race issues and spreading best practices using a variety of media tools, ie websites, newsletters, inter-government working groups etc. I have spoken to prison inmates and youth offenders, to have a feel of their thinking, why they re-offend and mitigating circumstances why they engage in crime, misdemeanours and social vices.

I highly recommend the Magistracy to all and have an unshakable faith in OBV endeavours . I stand for justice, I am British and I am Black and proud of all three.

Vernon James Buckle

 

 

Spot light on Sickle Cell Sufferer - Bedfordshire ( December 2004)

Unusual Sickle Cell Crisis

I am a forty-three year old female. In April of this year I gave birth to my second child, a bouncing, healthy, strapping nine pound baby boy. My pregnancy and the birth was very smooth (normal). I gave birth by caesarean section. Since the birth of my son I have had several sickle cell crisis, two of which took me to hospital.

It is my most recent sickle cell crisis which has had me very troubled and for which there seems to be no medical explanation. Has any sickler out there experienced something similar — a neurological crisis?

I recently went to A&E because of a sickle cell crisis - a headache, sickle retinopathy (bleeding in the back of the eyes) and frozen right leg and arm. I was admitted for a twenty-four hour observation. It was a very busy ward and I was awoken intermittently to nurse my baby. At five o'clock in the morning I was awoken as my baby needed his early morning feed. I felt fine and the baby was given to me. The nurse left the room and in an instant I froze.

I was fully aware of my surrounding. I had a heightened sense of awareness of my body. It was as if all my body was hypo-sensitive (like an electric surge going throughout my body), I became ultra aware of everything around me. The only problem was the fact that I was in a paralyzed state. I could not move any part of my body. I could see, smell and hear everything but could not speak or move, eventually I managed to press the button for a nurse. She came into the room asked If I was ok and how she may help. I tried to speak but could not speak. She went to get someone to help.

It took a few minutes for the paralysis to past. When help arrived I was back to normal and explained what had happened. The headache was gone, my leg and arm felt fine and I felt so full of energy, I felt I could move a mountain! I wanted to get up and do things - actually I did. I went for a walk along the corridors and back to my bed. I also washed and changed the baby.

When the doctor arrived, he checked me thoroughly and said I was fine. He had never heard of this happening, but if I felt fine and there was no obvious neurological symptoms (slurred speech, blurred vision and no mobility problems) it was probably the bodys way of mending itself. I was discharged five hours later from hospital.  

I had a consultation two weeks later with the heamothologist and I recounted the episode to her, she had never heard of anyone having an episode like it. Have you? I would like to hear from you.

A fellow sickle cell sufferer

Bedfordshire

(If you would like to contact this Sickle Cell Sufferer you may do so through MSCTG by emailing naheed@msctg.org.uk)

 

Spot light on Karen Hutchingson ( October 2004)

In spite of it

I am a Senior Youth and Community Development worker, who has suffered with sickle cell disease since early childhood. In the early years when very little was know about the condition, I was originally diagnosed as a carrier of the disease and therefore not in any danger of painful crises or complications. However as I got older especially during my pre-pubescent years I started to suffer with many of the symptoms consistent with sickle cell disease. I suffer with many painful crises and was told that I have Rheumatism, Dengue fever and other illnesses far removed from the real cause of my pain. We were later to find out that the confusion arouse out of the lack of knowledge in the medical professionals of the many variations of sickle cell disease. It was formally believed (in our area at least) that anything other than Haemoglobin SS represented the sickle cell trait, and was therefore not a cause for concern, my variant is Haemoglobin SC. Fortunately in my early twenties advancements were made and further research enabled people like myself to be treated appropriately when faced with painful crises several times a year and have to take a variety of precautions in order to keep myself healthy. I have never, however allowed my condition to prevent me from obtaining my goals and consider myself to have succeeded against the odds. This condition can be very frustrating and if not carefully managed, can lead to episodes of depression and feelings of helplessness. I have learnt that it is important to listen to my body and be alert to the warning signs it gives off. I can usually tell in advance when I am going to become ill, and I can usually predict how many days it will typically last. It is at these times that I have to succumb to my body, take the necessary medications and percussions to facilitate my recovery, but my understanding at the same time that it is a part of my life; it is going to happen and must therefore let it run its course. It is also important not to push myself physically or mentally at the time and to try and remain as stress free as possible.

It is my opinion that every single sickle cell sufferer is different and what may apply to one individual may not necessary apply to another. It is very important not to generalise when referring to the condition because the disease covers an entire spectrum of combinations, ranging from mind discomfort to sever debilitation. I can only speak with authority on my own particular experiences. Though very painful and limiting in times of illness I am happy to be able to look back at my life and see that I have managed to overcome some major milestones, in spite of my condition. I obtained my A levels then Diploma, followed by my MSc and have gained mobility through my work to the level of supervisory and management status. I am highly motivated and energized by the requirements of my job. My condition can be viewed as a well kept secret in my place of employment that is not a conscious attempt to veil or deny it, but rather an effort to accentuate the positives in my life, and to focus my attention on reaching out to those that I am in a position to help. I like to believe that I am who I am, not because of my condition but it spite of it.

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