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I was diagnosed at age four with having Sickle Cell Anaemia, my mortality date was given most ungraciously, to be between the age of fourteen to twenty-one years. After my parents, very messy divorce I was placed into a Wandsworth Community Care Home from age 8 until 10 years old and as a teenager returned the care of the community, this time under the borough of Haringey and via personal request from age 14 – 17years old. Whilst growing up I didn’t realise the impact of abandonment or the knowledge of my mortality rate at such a young age had manifest on my personal emotions, lifestyle and general attitude towards life; whilst growing up, subconsciously I found I would begin projects, usually community based, but not continue until completion. I’ve always expected a lot from myself and up until recent times seemed to think that its excusable for others not to commit half as much as I did into joint projects, friendships and all manner of relationships. Age has afforded me the wisdom of realisation that I would always give away my biggest piece, my last penny, my support, personal loyalty, and the most valuable possession we all have; being my time and because I didn’t expect the same to be given back to me it was hardly ever reciprocated. It was only three years ago, the realisation of this knowledge became evident to be textbook behaviour from someone living with ‘Post Traumatic Shock Syndrome’ one of the symptoms being a deep sense of worthlessness. However, whilst I don’t really like to label things or put things into a specific box, this information came as a healing path for me as I learnt it during the counselling sessions I was prescribed to attend after facing death after a particularly traumatic & painful sickle crisis caused by the lack of knowledge and blatant disregard for the advice and information, I and many other sickle cell patients have to offer the medical profession with regards to treating Sickle Cell anaemia in hospitals that don’t specialise with the condition. Being a mother of three, nutrition was a very important factor when bringing up my children; however, I really received my education on the benefits of nutrition when I was introduced to health supplements in 2003. As a woman living with the Sickle Cell disorder, throughout my teens, twenty’s and thirty’s, it wasn’t unusual for me to be admitted into hospital at 4 to 6-week intervals to receive powerfully strong pain medication and antibiotics, blood transfusions, oxygen and consistent saline drips; I was also dependant on a cocktail of daily prescribed medication when not in hospital. My school years was a harrowing experience, I remember through junior school in the winter, constantly trying to stand inside the doors during playtime and being sent back outside by the teachers and monitors, in those days; be it rain, sleet or snow none was a reason to be indoors during play or lunchtime; no excuse was considered. ‘The adult Sickle Cell Patient is the expert person when needing medical attention.’

During my early teenage years, I grew a love of sports and ran the 100 and 200 metres sprints and was also enlisted to be the first or forth leg of our relay team; but I always paid a heavy price of severe pain and/or hospitalisation the same night or following day. Academically, I was ok during school, but I missed many days, there were days whereas I was present but in too much pain to concentrate, when it was decided that I wasn’t to do sports, my behaviour took a turn and I became unresponsive during class and finally just didn’t go back, I’d made a childish decision to leave school and live as an adult. Upon leaving school I was notably successful with the process of applying, being interviewed and becoming employed, however, I could never keep a job whether it be full or part-time as I would constantly be letting my colleagues down with days off. In my case, with Sickle Cell Anaemia there are no overly obvious visual signs of any illness being present; it’s only when I fall into crisis, that my condition is manifest. A common phrase for people to say to me when they first realise I have this condition is: “You don’t look like you have Sickle Cell” and I’ve learnt that this statement is common towards Sickle Cell Patients, which adds false weight to those that have us labelled as pretenders, drug addicts and lazy. Anyway, my pride didn’t and still doesn’t allow for me to appear lazy and in 1997, my friend Denzil Hunte and I joined forces and created my first community venture, where we promoted local talent and organised community events always with the proceeds being donated to the Sickle Cell Community, we called ourselves ‘Him & Her Promotions”, we had great fun but due to lack of experience and personal funds our organisation only lasted for 18months, but it was a taste of community that would never leave me. I was born in the UK in the 1960’s to parents from the Caribbean, it was quickly realised that the doctors in the UK had very limited knowledge on this debilitating blood disorder, no fault of their own but this was a condition that was very new to the UK and this painful condition was here in abundance. I consider myself as one of the survivors; my peers and I were the original `guinea pigs’, (a person who is given new prescription drugs, sometimes before they are released on the general market, to test for side effects), every prescription drug that could seem helpful for the Sickle Cell condition was put through our bodies, which, by the way, was necessary testing for future benefit. When in crisis the pain from the Sickle Cell condition is intolerable to bear, but some of the side effects from those prescription drugs would sometimes be far worse. I actually found that by taking some of those prescribed medication, ‘which all have side effects’, caused me more suffering; with pain, hallucinations, hair loss, swollen gums and internal organs. I have endured many operations because of side effects from these drugs rather than from the Sickle Cell condition itself. Being a direct patient of Dr George Marsh during the 70s & part of the 80s, before his demise, I truly consider myself to be one of the more fortunate of UK Sickle Cell patients, in my opinion not only was he a very gentle and caring physician, he was also a great advocate for research into the Sickle Cell condition. He soon found prescription drugs that would help to relieve my extreme daily pain and swellings, with less side effects, but ‘they were side effects all the same’ and I was still being regularly admitted in to hospital. In 2003 my elder sister gave me a bottle of Aloe Vera Juice, “Drink this” she advised, “it will help you with your swollen stomach, your IBS, (irritable bowel syndrome, caused by excessive prescription medication), constant exhaustion, joint pains, skin problems, yellow eyes plus the other embarrassing and painful issues I endured, sure I thought, but I tried it anyway, well after my initial gagging, I informed her that this particular juice had date expired, but she was adamant that it hadn’t and that was how it was supposed to taste.

Because, and only because I trust and love my sister extremely, did I continue to drink this foul tasting juice, which, by the way, I now love; after around three weeks I noticed that I had more energy and after around 6-8 weeks I was now walking more upright, I also noticed that I was sleeping better during the night and that I was no longer reliant on the obscene amount of daily antacids I was taking which was keeping Gaviscon in business… and I was elated. With my new lease of life, I began my study into my new wonder juice and the other natural Supplements this company had to offer and now I was enlightened, so I did an in-depth study on this entire organisation and over a course of time, (around 6-8 months) I managed to wean myself off of many of the eight daily prescribed drugs and replaced them with natural supplements. During my study, I learnt that because quality natural supplements has no side effects as they were derived from food, ‘unless off course you are allergic to a certain food that your supplement is derived from’. And so I was now one of the Sickle Cell patients that could be treated more often as an outpatient as my once near monthly hospital admissions became reduced. My juice and supplements gave me a new lease of life, no longer was I constantly stuck at home following daytime TV and watching the Soap Opera’s in the evenings, I now had a physical energy and my brain was ticking, I had to do something worthwhile, but what? I was still ‘unemployable’ as I still had Sickle Cell and nobody wanted to take the chance with me, let’s face it, I could still have a crisis at any time and compromise my work colleagues, so it was at this point that I thought of Charity work, I’d heard about volunteering in the past, whereas I could do as little or as many hours that I could manage to help with a needy cause or charity. I chose the local Red Cross Shop, it was a ‘no brainer’, I applied, was interviewed and was accepted, I chose my hours and then for the next three months I was bored to tears, yes I was friendly and the customers and my colleagues liked me as I too liked them, and yes I felt I was doing something worthwhile, but I was bored to tears, waiting for someone to enter the shop to donate a puzzle or purchase a jumper was not how I wished to spend my newly found energy and to top things off, I was facing severe financial embarrassment…, with my extra activities and workload I was having to buy and use a lot more of my supplements which was putting me into personal debt, I was now spending around £220 per month on the supplements which of course helped my complete lifestyle immensely but was proving to be a monetary expense I could not afford. It was at this point that I was introduced into the valuable concept of Network Marketing. It was explained to me, that if I were to recommend these supplements to others who also found benefit, then I would receive a commission for my recommendation and if that person did the same I would also receive a percentage of what they were paid in commission and so on and so forth, well of course I had been sharing my products with my peers whom were also sickle cell affected but with this new found knowledge I had a new type of vigour and went about sharing the commission based concept with my peers as well and so we all benefited; our teamwork was a huge success and not only did we receive commissions, we also earned foreign holidays which included our families as well as team members… and life was great; but me being me with all this new found knowledge forced me to look at things rationally, if supplements are derived from food, would it not be better and cheaper for me to be eating food as a cure rather than fixing a problem after the fact?

Let’s face it, ‘The right food is supposed to heal the body and supplements are to assist your healthy diet, not replace food’ so if one were to be eating healthily to begin with, then it wouldn’t be a necessity to consume so many supplements. This is the reason why I then joined ‘Salad Master’ an organisation that endorses healthy eating and is supported by Change 4 Life and The Cancer Project. I had always enjoyed cooking so now sharing health knowledge whilst cooking a healthy meal for my friends and community was another no brainer and gave me the opportunity to promote the titanium healthy sets of cookware that encouraged a healthier eating lifestyle with normal every day food, sharing this knowledge also helped the health of my community with every meal cooked for ever had me taking a life journey never to be forgotten. My life is dedicated as a community volunteer and whilst I admit to still living with the symptoms of Sickle Cell Anaemia, I have been better able to cope and manage my life. With so much energy from my meals and Aloe Vera supplements over the years I have able to stay true to my first love and commit time with passion to serving my community, this had begun in 2003 and continues to this very day; back then it was my daughter who was the architect of my introduction to serving the community. At the time, Leanne was 19 years of age, she had been working in a bank for a year, couldn’t stand much more of it and had just started on a new part-time college course, with a personal ambition… “I’m going to open a ‘Real Home’ for the youths that are labelled as dysfunctional’, she said, but I need experience with motivating them, I also need a University Degree and around £40,000 to make it all happen,” Do you think you could help me to organise some type of Motivational Event Mum? I need to experience organising a community event which I will need to write a report on for my course”. Well after a couple of hours we came up with a Sponsored Walk and this took a lot of organising, we called it Community Miles for Sickle Cell, this was it…. it was now that I had entered into the real world of ‘The Community Volunteer’ and gained my experience from the grass roots level. Together Leanne and I organised our first six-mile sponsored walk with 80 members of the community out in our support walking and as a community, together we raised over £1000 for our local Sickle Cell Support Group. Over the years our voluntary work has continued and whilst Leanne got her head down for college and then the hard slog of university, over the next four years I organised another two sponsored walks, two youth talent contests, therapeutic Swim & Massage sessions for people with Sickle Cell, Thalassemia, Arthritis and other illnesses and also; Open Day events to promote other voluntary organisation in our community. By now I had helped to raise awareness for Sickle Cell and other health groups & hundreds of pounds for charity, I found my work to be very satisfying and I received recognition and certificates for my voluntary services & achievements and I felt very necessary, since 2003 I have continued my voluntary services to Sickle Cell Support at a management level and have served on the committees of both Haringey and Enfield Sickle Cell Support Groups. In January 2015, I founded the Sickle Cell Care, Advocacy, Unity, Support with Empathy group, more commonly known as SC Cause, I made a conscious decision that this group would be a notable active & effective force in the Sickle Cell Community, with the structure of the group geared more towards action and empathy with education towards selfhelp being the major factors of the groups foundation, www.sicklecellcause.com to date, just two years since the conception of SC Cause, the number of our members has grown phenomenally which proves our need and as a group we’ve been recognised by the Haringey boroughs ‘Community Impact Award’, receiving commendation for ‘Effective Community New-Comers 2016.

So now that I have arrived at my fiftieth year, whereas I was advised that my life would expire between the ages of 14yrs -21yrs; I am the recipient of a much healthier and happier lifestyle than I was in my younger years and my daughter and myself are very happy helping with mentoring & assisting with supporting & helping to build the confidence and financial security for adults and youths alike. I believe ‘knowing ones worth’ is of paramount importance, I grew up always believing that each day could be my last and therefore lived with a very cavalier attitude towards life. However, once I became a mother and continued to live and get stronger as I got older, I realised my worth knowing that if the doctors could get it wrong, then it was up to me to make my life journey worthy, notable and necessary. I am no longer quietly ashamed of being a ‘giver’, as I was made to feel when constantly volunteering to do what others wouldn’t do for others, it is my calling and I am comfortable with sacrifice and volunteering because I love community; however, over the years I have learnt to manage myself and not to give without receipt. By this I mean that every-day that I give of myself I must feel comfortable doing it, it must be covered by the correct motive behind it; it must add personal worth and growth to the receiver as well as to myself the giver, whether it be economically, spiritually or financially the correct motive for community work must be at the helm. I found my niche for financial and economic giving through Network Marketing as this vehicle is the only way forward to enable and empower people with health, educational and wealth issues to be able to succeed fairly in today’s times. So, I have reached my older years and am now a grandmother, something I thought I would never see, I have found myself to be more accepting of others. A milestone was being asked to join the committee of a conscious community organisation called the Council of Elders for Community Safeguard, a role that I take very seriously indeed because I didn’t ever expect to be considered an Elder! I accept who I am and still feel my deep need to assist and share information. I love to travel and enjoy taking groups of people abroad to enjoy relaxation, detox with nutritional and holistic education for better lifestyle, a project we began in 2012 called the Health Enhancement Project also known as HEPS. http://www.healthenhancementproject.com For a HEALTHY ‘THREE COURSE MEAL’ PRESENTATION, EMAIL: healthy_living1@hotmail.co.uk I am still very proud to present these healthy meal demonstrations and share the knowledge; Everybody who books me will receive a THREE COURSE HEALTHY MEAL, you may have up to 5 adult guests. All you have to provide is an empty kitchen sink and non-alcoholic beverages for your guests. You see, I now only consume two supplements per day as I get my body’s daily nutritional needs from my food that is cooked in my titanium cookware, I no longer need to take prescribed medication on an everyday military basis as I am now better able to maintain my Sickle Cell condition more naturally. I am an advocate and speaker of Sickle Cell Anaemia and work hard to inspire my peers and community. I am a business builder and a frequent traveller with an interest in our communities around the world. I am a Grandmother with a loving growing family…. Oh!!! and I have Sickle Cell Anaemia, however, Sickle Cell Anaemia no longer has me… I am often asked for my formula to success, which I am very happy to share and this is the advice I gave to the Leaders and Rising Stars within the Healthy Living Network. 1. Give of yourself without expectation, no one is you, so do this openly and expect nothing in return. 2. Register to Healthy Living International; there you will be introduced to life saving formulas with regards to better health, wealth and community support. Email: healthy_living1@hotmail.co.uk Tel 07508 908549 3. Open a ‘Skype’ account, also download ‘WhatsApp’ to your smartphone. 4. Be open and allow our team to help restore your faith in YOU. Note: If you cannot open your hand to GIVE, your hand will remain closed when it’s time to RECEIVE. I look forward to speaking with you.

Profile for Healthy Living International

Samantha Greaves@50  

A short description of personal life living with Sickle Cell Anaemia

Samantha Greaves@50  

A short description of personal life living with Sickle Cell Anaemia