In October guest blogger Rochelle Lambiris, a parathyroid patient turned advocate in Greece, shared her parathyroid journey with us. Read her full story through this link.
Rochelle is now reaching out to the Hellenic Endocrinology Society through the Open Letter below in hopes of creating change for those who suffer from primary hyperparathyroid disease. There continues to be a lack of awareness of the symptoms and biochemical presentation of primary hyperparathyroid disease in both the patient and medical communities around the world. Rochelle hopes that by educating and raising awareness, needless suffering can be avoided in the future.
Read and share her Open Letter, and if so inclined, reach out to Rochelle through the contact information she has provided below to see how you too can help raise awareness of primary hyperparathyroid disease in Greece.
OPEN LETTER TO ΕΛΛΗΝΙΚΗ ΕΝΔΟΚΡΙΝΟΛΟΓΙΚΗ ΕΤΑΙΡIA -THE HELLENIC ENDOCRINOLOGY SOCIETY
For several years you have organized the very successful “ENDOCRINE VILLAGE” in Athens where information on endocrine disorders is freely available for the public as well as tests for certain illnesses. However, up till now there has been no information regarding hyperparathyroidism and no tests either.
Hyperparathyroidism is NOT a rare disease, in fact, it is quite common.* Its incidence is difficult to ascertain because many sufferers continue their lives – often with serious symptoms – without having been tested or diagnosed.
We are NOT doctors: you are. And of course you are much more knowledgeable than the people who have….or suspect they may have….the disease. But messages similar to the following are voiced by members of patients’ groups all around the world:
“My calcium was high for years. Why wasn’t this investigated further?”
“I kept producing kidney stones and going to hospital to have them removed. Why didn’t they check me for the possibility of hyperparathyroidism?”
“Worsening osteopenia and high calcium year after year….why did nobody think to check for hyperparathyroidism?”
We are well aware that there are a multitude of potential symptoms, and that many can be attributed to the menopause, aging, or other conditions.
However, all we would like to suggest is that you take a big step forward and include a few basic tests for the possibility of hyperparathyroidism…perhaps serum calcium, PTH, and vitamin D: if all these are not feasible, maybe at least serum calcium could be tested. This would not constitute a definite diagnosis but would indicate the possibility of having the disease so further investigation could follow. And years of potential suffering might be avoided, as well as costs to the State of multiple tests etc. over time.
Perhaps your example would be followed by other countries in the future?
Thank you for your time,
Patient Advocate – HYPERPARATHYROIDISM GREECE
www.ncbi.nlm.nih.gov/pmc/articles/PMC4771429/ It is the third most common clinical endocrine disorder after diabetes and thyroid disease
http://www.yourhormones.info/endocrine-conditions/primary-hyperparathyroidism/ It is the third most common endocrine disorder in men and women.