National Sarcoidosis Organization

Born and raised in central Alberta in the country Melany has always had a huge love for the outdoors and animals. She learned at an early age how to manage things and that hard work really does pay off. She has an older brother who taught her how to be strong and also that you have to fight for what’s yours.

Melany graduated high school and worked many different types of jobs ranging from hair dressing, cooking to the oil patch. Always living life to its fullest and never turning down a challenge as she has run a few small businesses as well.

In 2002 she had her first son and he became the light of her life. She managed to raise him as a single parent, work and build a new home where they still reside today. During that time though she became ill and had a cold that just would not go away. Tests and x-rays were done and it showed that the lymph nodes in her chest were enlarged for a long period which then signaled the doctors to do biopsies of both her lungs and lymph nodes in her chest.

Diagnosis came back as sarcoidosis. Melany was told that most times it would just go away after two years and that there was no concern over it. She carried on not thinking too much of the new diagnosis and neither did her doctor.

Over the years she had many unexplained illnesses such as kidney stones, long colds, heart palpitations infections, GI troubles and funny blood work but nothing that raised any suspicions about sarcoidosis.

She met her husband in 2007 and they had their son in the fall of 2009. Through that time she still worked full time and managed well with her family.

Spring of 2011 she started to get ill with GI symptoms and rapid weight loss which then flared up multiple other symptoms including heart palpitations again. This time things were a lot worse and her doctor didn’t know what to do so he referred her to a GI doctor. Tests came back as severe IBS and inflammation of the stomach. Then after multiple visits to the ER, her doctor referred her to a cardiologist and her pulmonologist. There were more tests done and an MRI of her heart showing the damage done which they then diagnosed as CS (cardiac sarcoidosis).

She has since had hundreds of tests and holds 5 specialists that are all treating her. She has been to the Mayo Clinic in Rochester Minnesota as well and seen the lead (CS) cardiologist who is very familiar with many aspects of the disease.

As of today she is currently on many different medications for her heart, GI and of course prednisone.

It was through all the lack of knowledge, understanding and compassion she received, she started to fight for her rights in Canada to be able to get better help here.

She has been able to get proclamations for sarcoidosis awareness month in April as well as start the organization having it incorporated and registered with CRA and the BBB. There is a website she started for the organization as well, and she has been in contact with many politicians, health ministers across Canada and education facilities and their doctors. It has been a lot of hard work and many sleepless nights but she pushes through in hopes that Canadian’s can get the help, support and knowledge they deserve.

A small town girl with a huge heart, big dreams and a never ending fight for a cure!