 Privileged to have spoken at the #Pompe Preceptorship in Manchester about living with #Pompe disease. Organised by The Mark Holland Metabolic Team at Salford Royal, to educate professionals worldwide on early #pompe symptoms #pompe diagnosis, managing day to day, ventilation, cough assist machine, walking frame, mobility scooter, electric bed, electric chair. Family support, medical support #enzyme replacement therapy. There is life after a #pompe disease diagnosis.
These photos ...stuck in the lift at the hotel, thankfully after my speech. It took several staff members and the use of a saw to free me! #disability #sense of humour #accessibility?
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Privileged to have been invited to speak at the 5th Swansea Perinatal Symposium 2019 (SWAPS 2019), at The Liberty Stadium, Swansea. Hosted by the Department of Neonatal Medicine, Singleton Hospital, Swansea - Improving outcomes for the mother and her child. Shared our journey with 200 delegates from the the medical profession including paediatricians, neonatologists, obstetricians, midwives, neonatal nurses and advanced #nurse practitioners. We had a newborn baby who, following a #brain haemorrhage at birth, we were told was unlikely to survive the night. If he did, he was likely to be 99% brain damaged. Our baby survived. We talked about the neonatal care our son received at University Hospital of Wales, Cardiff particularly during the first hours, days, weeks and months. We explained what worked well and what could have been done differently. Diagnosed with #hydrocephalus, #cerebral palsy. Late achieving his milestones such as talking, sitting up, walking, the support of his second Mother, aka his sister, 3 lots of brain surgery, physiotherapy, occupational therapy, conductive education, hydrotherapy, additional support at school, he has grown into a wonderful and capable young man. He has a full-time job, drives a car and leads a fulfilling life. It's what you can do that counts. First hand experience from parents of #neonats, helping improve #outcomes for others. Earlier this month I was delighted to represent The Neuromuscular Centre at the 'Great Get Together Think-In" at Storyhouse in Chester where we shared and pooled ideas for the forthcoming Great Get Together weekend to be held on Friday 22nd June to Sunday 24th June.
After a tour of the building we had an open brainstorming session, facilitated by representatives from Storyhouse and Bright life. This event was held nationally for the first time last year in celebration of Jo Cox (the MP who was murdered) whose belief was that "We are far more united and have far more in common than that which divides us". An exciting few months ahead to plan what should be a fantastic weekend. Andrea (on behalf of The Neuromuscular Centre) Om Monday 5th March I was delighted to speak at the opening day of The Diversity Festival at Chester University.
The session entitled "Walk in my shoes" where 5 of us explained how our medical condition / disability affected us, our limitations and how those around us can help make our lives easier on a day to day basis. We talked about having a hearing impairment, being deaf, surviving cancer and physical disabilities. Some of us have had our disability since birth whilst others had developed it later in life. We demonstrated that despite our disabilities / medical conditions that with the right support, whether that be equipment or help from others, that there are no limits and you can achieve in all aspects of your life. The audience from Chester University were inspired and appreciated the insight into our conditions and ideas for ways in which they could help others similarly affected. Making life better for all. Delighted to be part of the Diversity Festival. Andrea It's been a long time since my last blog. I wanted to share with you some exciting news. I have teamed together with Ali and Jackie from SeeCommunications CIC to offer Equality, Disability Awareness training. During 2017 we were busy writing and putting together our training package.
Ali, Jackie and I each have personal and professional experience of disability and are passionate that everyone should be able to reach their full potential in life. Our training covers physical disability / mental disability/ mental health awareness / autism / adapting to ageing population. We also cover the Equality Act 2010 and explain how organisations are required to make 'reasonable adjustments' under this law. Our training is interactive and fun. You will be inspired and motivated. We delivered our first session in December in North Wales and have lots more planned for 2018! Want to know more??? Please contact Andrea Duckworth - enablingability@gmail.com Delegate feedback..."Thanks for sharing your story". "Inspirational."
Earlier this month I was invited to speak at The Diversity Festival 2017 at Chester University. The theme of the day was "positive representations of disabled people in employment". I demonstrated that despite having a long term condition / disability that need not stop you from seeking employment. I shared my own experience of living day to day with a rare disease and how a good support network helps you live your life and remain independent. Just over a year ago, I used my disability in a positive way to start my own business as a motivational speaker and disability coach. I believe that everyone has potential. I talked about the importance of organisations having a diverse workforce and that everyone has skills and potential. To not consider employing somebody with a long term medical condition or disability could mean that you are missing out. Disabled people have strengths, are loyal, reliable, and enrich your workforce. I also ran 2 workshops where delegates had the opportunity to try using aids, such as a wheelchair, walking frame and walking sticks. We discussed their experiences. We also talked about real life examples of companies and services that get it right, where going that extra mile can really make a difference to both customer and employee satisfaction. Great to network and promote inclusion and diversity. A.Duckworth, Enabling Ability, March 2017 Delegate feedback- "Inspiring","Motivational", "Thank you for sharing your story" "Outstanding" "Personalises our jobs"
On Monday 6th March I had the privilege of speaking to employees at Amicus Therapeutics in Gerrard's Cross, at their Pompe in Focus Lunch and Learn. I gave a patient's perspective of what it is like to live with Pompe disease, a rare progressive neuromuscular disease. I talked about events leading up to my diagnosis, the diagnosis itself and how I manage to continue to enjoy and be a part of family life. I talked about coming to terms with using night ventilation when our children were very young. I also explained how I was thrown a lifeline in 2006 when I was offered Enzyme Replacement Therapy and how this has had a positive effect on my lung function readings and on my daily life. I demonstrated how important it was that pharmaceutical companies provide therapies for those with rare diseases and what a positive contribution it makes. I demonstrated that living with a long term medical condition or disability need not hold you back and in fact it can have a positive outcome. I talked about how I had started my own business and that I am passionate about helping others particularly those with a medical condition / disability achieve their potential. It was a privilege to be asked to be part of their event. A. Duckworth  I was delighted to be a stallholder at the Disability Confident at West Cheshire College yesterday. This was held in conjunction with the Dept of Work and Pensions and Cheshire Centre for Independent Living.
It was great to network with local companies and discuss the advantages of employing people who may have a disability / long term medical condition. The important thing to remember is that the skills and attributes that people with disabilities bring to your organisation make a positive impact on your business. See the potential, don't miss out! I hope to be involved with disability awareness training with many of the attendees to ensure that businesses and organisations are inclusive and fair to all. It's all about breaking down barriers and making adjustments to accommodate a diverse workforce. If you are reading this as an employer, and feel that your organisation could benefit from disability awareness training, please get in touch. I would be pleased to work with you. Networking and training and making life better for everyone. A.Duckworth, 23/2/17 Delegate feedback, Courageous, inspiring, optimistic, huge thanks for sharing your story. On Wednesday 8th February I was delighted to speak to international delegates from Sanofi Genzyme Pharmaceutical Company at their conference in Mainz, Germany.
I shared my experience of being diagnosed with Pompe disease, a rare neuromuscular metabolic disease. I talked about events leading up to the diagnosis, the diagnosis itself and how, despite this progressive disease, I manage to lead a happy, fulfilled and independent life. I explained that the biggest shock of all was in 2003, when I was told that I needed to use night ventilation as my carbon dioxide levels were becoming dangerously high. This was a huge adjustment for our family. In 2006, I was thrown a lifeline, and was one of the first patients in the North West at Salford Royal Hospital, Manchester to receive ERT (Enzyme Replacement Therapy). I explained how my experience of having ERT was a positive one and that although my mobility was still slowly deteriorating, my lung function tests showed a stabilisation over the last five years. As I explained, if your legs don't work, you can use aids but if you can't breathe you're stuffed! I demonstrated that good support networks are vital to my quality of life and include, family, PA's (my special friends), hospitals, The Neuromuscular Centre in Cheshire, AGSD (The Association of Glycogen Storage Diseases) and Dial West Cheshire Shopmobility . Exercise plays a big part too. I explained how having such a disease need not define you. For the past ten years ERT has given me a new lease of life. I enjoy time with my family and friends and recently started my own business. Finally, I explained that the Pompe Community want to carry on receiving ERT and that their work is essential in stabilising our condition and giving us a good quality of life. We await the next generation of treatment. A privilege and a pleasure. A. Duckworth February, 2017 |
AuthorAndrea Duckworth is a motivational speaker & coach with over 20 years experience in the field of disability. Andrea is living with the progressive disease Pompe (Acid Maltase Deficiency) more Archives
May 2019
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