A year ago, I entered intensive care two days after the delivery of my second boy, Felix. Life gave me the chance to live, so I decided to make the most of it.
In the 10 days preceding Felix’s birth, I went to the emergency room four times rather than once. I wanted to be taken care of for uncontrolled asthma symptoms and an acute arthritis attack. So much so that I was no longer able to walk let alone use an asthma pump. Despite these round trips, a prescription for morphine and a blood test, nothing was conclusive. Most disturbing was hearing a doctor say that my asthma attack was “in my head” and that I must just be anxious to give birth.
Being admitted to the hospital for the delivery highlighted the seriousness of the situation. I was unfortunately in an advanced phase of the disease, suffering from a hemorrhage in the lungs. Anyway, it was only when I started coughing up blood that I was taken seriously. It was no longer “in my head”.
My situation is not unique. Unfortunately, rare diseases, such as Churg-Strauss syndrome, which I was diagnosed with, are little known and therefore little considered by a large majority of first-line caregivers. Fortunately, there is the Quebec Orphan Diseases Association (RQMO), whose mission, among other things, is to raise public and medical awareness of rare diseases.
In addition to having difficulty receiving a clear diagnosis, we, people with rare diseases, often encounter pitfalls in obtaining optimal medication, because the RAMQ does not necessarily cover the cost of this medication. We therefore resort to a second-choice drug, which is less expensive, but with greater side effects.
However, I could not ignore the more than exceptional work of the medical team who were able to make a diagnosis of an extremely rare disease as well as the quality of the medical follow-up that I currently have. I can attest to the fact that, when we “entered” the system, we have a very good quality of care in Quebec.
A year ago, I was out of breath, in intensive care, away from my baby, and wondering if I would survive. Today, I have the chance to breathe and to live. I am lucky to have a wonderful family and I want my children to be able to enjoy a mom for as long as possible.
So I decided to take up a challenge which will be to run 10 km for the RQMO and raise funds from my network. It is by financing the mission of this organization that we will be able to ensure that rare diseases will be highlighted and that families will be able to be supported in this ordeal.