Book Details
| Published | 01 October 2023 |
| Language | English |
| Pages | 270 |
| Interior | standard color |
| Trim Size | 6" x 9" |
| 152mm x 229mm |
| Binding | paperback |
| ISBN | 9781783242870 (paperback) |
Lymphoedema United - You are NOT alone!
Lymphoedema stories from around the world - Volume 1
Summary
If you are reading this, the chances are that you either have lymphoedema (lymphedema), know someone that does, or work in the medical profession caring for people with this lifelong and sometimes debilitating disease.
Lymphoedema affects millions of people around the world, yet it is often a lottery whether the appropriate level of healthcare is received. That can leave a person living with this lifelong disease feeling desperate, neglected, and alone. You are NOT alone!
Advocates Amy Rivera and Matt Hazledine are joined by 34 people living with lymphoedema from 14 countries from around the world, who share their personal experiences and top tips, to help you to live better with lymphoedema.
Many of us experience a varying level of professional care from medical experts IF you have been successful in getting a diagnosis. Many are still seeking a diagnosis, which means that they are unlikely to be receiving the appropriate health care and advice on self-management techniques, which is important during the early stages of lymphoedema.
This can result in people feeling helpless, alone and desperate. Lymphoedema can be extremely challenging to both physical and mental health, especially when coming to terms with the diagnosis and adapting to this life-changing condition.
Some people are willing to talk about their health issue, while others keep it hidden. Some people confidently wear their compression garments in public, while others hide it under baggy clothes and some people just don’t or can’t go out at all.
This book includes personal experiences and tips from 34 people from 14 different countries. Some have primary and some have secondary lymphoedema, effecting their arms, legs, trunk, head, neck, and pubic area. They were willing to share their story to reassure others they are not alone. Some guests have included their contact details, so, if you relate to their circumstances, you can connect with them directly.
Meet the Author
In 2011, at the age of 40, Matt experienced a severe episode of cellulitis in his left leg, which hospitalised him for 14 days. This subsequently caused a significant swelling called lymphoedema, a chronic lifelong disease with no cure.
During the initial years with lymphoedema, Matt really struggled to come to terms with adjusting his life to accommodate his very swollen leg. Through trial and error, he has worn every appropriate compression garment, tested almost every product, had all therapies known to him and two different types of surgery. He now knows what works for him and what doesn’t.
In 2021, to commemorate 10 years of living with this life-changing condition, he wrote his first book ‘How to Live Better with Lymphoedema – Meet the Experts’ to share his extensive experiences and useful tips to help others and raise money for the Lymphoedema Research Fund. He is joined in the book by over 20 experts from the lymphoedema medical profession, each providing trusted information and guidance.
Matt also launched a patient-focused, one-stop-shop website for people with, or newly diagnosed with, lymphoedema. LymphoedemaUnited.com provides everything Matt would’ve wanted to know when he was diagnosed and hopes it saves time and stress for others going through a similar journey.
Over the past few years, he has been in a much happier and positive place and has continued his mission to help others living with the condition, whilst raising over £30,000 for various charities. Matt has been a Trustee of the Lymphoedema Support Network, featured in the Health Section of the Daily Mail, written for newsletters, blogs, podcasts and books, been interviewed on video, webinars and public speaking at events, support groups and lymphoedema conferences.
Matt is motivated to make a positive difference and help others to live better with lymphoedema.
If you would like to get in touch with Matt, please send him a message via his website www.lymphoedemaunited.com and follow him on Facebook, Instagram, YouTube and Twitter using @LymphUnited.
Amy Rivera, the founder of Ninjas Fighting Lymphedema Foundation, brings a wealth of personal experience and passion to the pages of this anthology. As a lymphedema warrior herself, Amy has faced the challenges and triumphs of living with this condition for over 30 years. Her relentless pursuit of knowledge, advocacy, and empowerment has not only transformed her own life but has inspired countless individuals around the world.
Through her unwavering determination, Amy has become a driving force in the lymphedema community, spreading awareness, providing support, and fostering a sense of belonging. Her journey, filled with misdiagnosis, failed procedures, and eventual healing, serves as a beacon of hope for others navigating their own lymphedema path.
In this anthology, Amy fearlessly shares her story, offering valuable insights, practical tips, and a message of resilience. Her contribution reflects her deep commitment to raising awareness, promoting education, and inspiring positive change. Amy's dedication to making a difference shines through her words, igniting a sense of empowerment and reminding us all that we are not alone in this journey.
Join us in celebrating Amy Rivera, a remarkable advocate, visionary, and warrior, as we dive into the profound and empowering stories that make up this transformative anthology.