Janine Merryweather, a 37-year-old mother of two from Nottingham, has been living with the rare Addison’s disease for over a decade, affecting her hormone system and causing symptoms like thirst, tiredness, and depression. Despite her struggles, most NHS workers are unaware of this deadly illness, leaving Janine feeling isolated and without the proper support. Her illness has forced her to give up her business, and she relies on carers for assistance with daily tasks. Regular collapses and hair loss are just some of the challenges she faces daily, leaving her with no quality of life and feeling like a “shell” of her former self.
The journey with Addison’s disease began in 2005 when Janine was diagnosed with a tumor on her pituitary gland, responsible for hormone production. Despite the benign nature of the tumor, Janine continued to experience worsening symptoms over the years, leading to her Addison’s diagnosis in 2013. Daily steroid injections are part of her treatment, but any physical or emotional stress can trigger an adrenal crisis, which can be life-threatening if not treated promptly. The lack of awareness about Addison’s within the medical community has left Janine struggling to receive timely assistance, as highlighted by an incident in 2017 when she collapsed while waiting for help at a walk-in center.
Living with Addison’s has taken a toll on Janine’s overall health, leading to the development of diabetes, alopecia, and even a spinal injury from a fall while ice skating. Despite her ongoing battles with the disease and its complications, Janine’s quality of life has deteriorated significantly, leaving her feeling exhausted and isolated. The lack of awareness and understanding of Addison’s has added another layer of difficulty to Janine’s already challenging journey, and she continues to navigate her illness without the proper support and understanding from the healthcare system.
The rarity of Addison’s disease makes it challenging for individuals like Janine to receive the necessary care and support they need to manage their symptoms effectively. With only around 9,000 people living with this condition in the UK, awareness and education among healthcare professionals are crucial to ensure timely diagnosis and treatment. Janine’s story sheds light on the struggles faced by individuals living with rare diseases and the importance of raising awareness to improve the quality of care and support available to them.
Despite the difficulties and setbacks she has faced, Janine remains resilient in her battle against Addison’s disease, determined to raise awareness about this rare condition and advocate for better understanding and support within the medical community. Her story serves as a reminder of the challenges faced by those living with rare diseases and the need for increased awareness and support to improve their quality of life and ensure they receive the care and understanding they deserve. Janine’s perseverance and courage in the face of adversity are an inspiration to others facing similar challenges, highlighting the importance of continued advocacy and education to make a positive impact on the lives of those living with rare diseases like Addison’s.
