Every Little helps
Olivia Addo— MSCTG Member— expresses how she felt about MSCTG's Annual General
On the 9 th of December 2006,there was an event at the Methodist Church Cricket Green Mitcham; and guess what? It was the AGM of MSCTG. There was food, music, and cakes to be eaten. There were talks from young and old sufferers as to how they cope with sickle cell disorder, and a talk from a carer— In fact it was more of a discussion than a talk. I found it very interesting and it is a shame that not every carer that I know was able to attend. I personally had a chat with an adult sufferer who put my mind at rest as to whether young sickle sufferers could educate themselves up to the level they want to. It was also interesting to know the medical research that is going on to combat the disorder. Talking about the attendees, I can say with certainty that people left the AGM with a positive mind and I am sure they will be asking themselves WHAT CAN I DO FOR THE GROUP?. What I can say is that, that event was organised by a handful of people. If we all joined hands in one way or the other; can you imagine how grand, pleasant and beautiful it will be next time.
Tea Pamper Party
On the 21st August 2006 MSCTG held a fundraising Tea Pamper Party for all members. We had two Body Shop Consultants who did facials and makeovers, a Reflexologist, and back seated Massage Specialist. We raised £124.79 and would like to say a big thank you to all those who attend and supported us on that day.
Eula and I received a lot of positive feed back from all of you and we hope to hold similar events like this in the future so that those of you that missed this occasion will have the opportunity to come next time. We haven't forgotten you!
We had many volunteers to whom we are very grateful as they helped make the day a success. I would like to particularly thank :
Althea Finch– Back seated Massage Specialist
Christine Sutton – Reflexologist
Heather Thomas –Body Shop
Mari Ebora – Body Shop
Natasha Shilingford – Nail Technician
Theresah Boakye – who baked the lovely home-made cakes
Norecia George – who offered support throughout
Marcus Otite – our enthusiastic cameraman
It is a natural event and widely recognised that as human beings living and coexisting within a civilised society our behaviour and personalises are heavily influenced by various external factors in our lives. These external influences could include our personal experiences, culture, religious beliefs, knowledge (or lack of it) and family support.
When an individual is living with any potentially life treating disorder, these influencing factors can be amplified and can affect the way in which they react. It is very important to note that these factors affect those of you who are not sufferer's equality significantly; therefore you potentially have the same level of or even more prejudge-mental or stereotypical illusions about certain aspects of society.
It is only appropriate that we point out once again at this point that the staff at MSCTG are not medically trained, therefore no information on this website should be taken as advice for a particular case, for that an individuals consultant should be approached. However we do have a wealth of personal and organisational experience regarding Sickle Cell & Thalassaemia and the affects it has on families and individual sufferers.
We have attempted to provide our readers only with a generalise introduction, of how Sickle Cell disorders can also affect the social aspects of an individuals life. What we aim to achieve from the following is the recognition that a patient suffering from Sickle Cell should be viewed holistically, we are attempting to demonstrate the need to look at how people's entire lives are effect by this so called intermittent crises disorder.
Effects on Lifestyle
Due to the inconsistent manner in which crises happen, at a young age and through their adolescents, sufferers find that their education can be severely disrupted which can have an affect on there performance at examination level. When in employment, interruptions due to hospital admissions unfortunately make it difficult for some sufferers to maintain a healthy career. Therefore activities that others take for granted such as obtaining a mortgage become difficult to achieve.
In general life, due to the constant risk of a crises sufferer's find that their actives are restricted, for example, participating in potential over exerting sports or an activity which exposes them to cold weather could set off a crises. This in turn is then inevitably going to affect any relationships that the sufferers have.
It is a sad fact that Sickle Cell suffers always live with a certain level of uncertainty about there futures. It has been reported that this potentially has many psychological effects, such as fear, feelings of helplessness, anger, non compliance of treatment, withdrawal, depression and poor self image just to state a few.
What would help sickle Cell & Thalassaemia Suffers?
- Low rise easy access homes
- Wheel chair assess
- Central heating with adequate insulation
- Damp free environments at home, work and school
- Quick access to Emergency services
- Occupational Therapy
- Advice on diet
- Speech therapy
- Rapid response
- General Practitioner (GP)
- Contraceptive advice
- Social care
- Social worker
- Needs assessed regularly
- Home care help
Child care provision and support
Many people with Sickle Cell will live successful productive lives, as one of our members Karen Hutchingson has quoted “I like to believe that I am who I am, not because of my condition but it spite of it.”