Heather worked at one of the leading department stores most of her working life until just before retirement age when there was restructuring. Her job was demanding, standing for many long hours and interacting with locals and tourists alike to ensure they got the items they sought as they entered the store.
She maintained her health through daily exercise, using total gym workouts, constantly doing step aerobics to various video workouts as well as walking various trails in the outdoors. It was a lifestyle habit she maintained coupled with eating healthy and cooking healthy dishes. Heather was active in church, being a steward, she functioned in various roles within the church for which she was entrusted and was always on time.
Her Methodism caused her to serve in the Dorcas Society and the Women’s League as well as she’s always had an internal prompting to be of service.
Married to her husband Watts of many years, they have been pillars of support to each other. Together they have two children and six grandchildren.
Heather was preparing for a life of healthy living especially as she aged. Then along came 2017.
She noticed that her feet began swelling by the ankles
Her joint flexibility became limited
Knee pain limited her walking since it became too painful to do so
This developed into the inability to stand normally
The degenerative illness caused her to become bow at the knee and it was increased pain
Weakness stepped in depriving Heather of her independence
Muscle weakness spread throughout her body
She eventually became bedridden
The path that was followed
Multiple visits with Doctors, Specialists, Physiotherapist, Neurologist was a process that came afterwards and no one was able to correctly identify what was wrong. The feedback was frustrating and expensive, yielding no results.
The process included the following from the aforementioned:
Diagnosis of secondary arthritis
Administration of Fosamax, medication which made the situation worse
DVD reports which were prescribed and not used
Confirmations of misdiagnosis
Psychological assessment suggested
Nerve and Muscle Tests
Blood tests [revealed an Alkaline Phosphatase of >500]
Referred to therapy - got weaker
Referred to pain management doctor - prescription caused severe reaction
Another pain management doctor
Neurosurgeon - suspected Paget's Disease
Referred to Rheumatologist
Finally the Mayo Clinic, who asked for the following:
Samples sent to them overseas
Confirmed disease by the Endocrinologist as a Tumour induced Osteomalacia [TIO]
Conclusion - Tumour induced Osteomalacia [TIO]
Here is where we are:
This disease is quite rare
The most successful treatment is surgery once the tumour is located. Which is hard to do. Full body MRIs are required and are not available in Barbados.
The temporary alternative is an annual injection series which costs US$200,000 per annum.
Action steps have been taken by her daughter Lisa who is based in the USA to assist with covering the costs of treatment via a Go Fund Me fundraiser. We hope you can help and though we understand the tough times of this pandemic, every little bit helps. We hope you can help if it means just sharing to your friends and family, especially since treatment for this condition is not readily available outside of the United States of America.
Thank you for reading and sharing. We hope you can pledge your support. We are living, something that can happen to any of us - The Arrival of an Illness.