The story of Virginia
A life almost like any other…
I discovered that I had Bartter syndrome type 3 in 2018, after a medical wandering for several months. A complicated emergency hospitalisation at the end of 2017 accompanied by very high hypokalemia. With this disease the reabsorption of different salts such as potassium, sodium, magnesium or calcium is disturbed. Even with extensive treatment, this disease leads to a series of more or less disabling symptoms: dizziness, tachycardia, cramps, tetany, chronic exhaustion, muscle and joint pain, kidney stones and risk of chronic kidney failure to be monitored in my case. Today, even with 14 potassium tablets a day and 2 magnesium ampoules, my levels are still very low and lead to an invisible handicap that is sometimes very difficult to understand. I use a pretty pouch like the one in the photo to make taking the treatment more fun. It’s the little everyday things that help to keep me going.
It’s a rare disease that is complicated but it can be managed. You learn to live with all these symptoms.
We adapt and we manage to have a life almost like everyone else.
Like others, I found myself very alone at the beginning of the discovery of this disease, and by exchanging with other patients we decided to create an association to support Gitelman and Bartter syndromes (www.gitelbart.fr).
So I have a life almost like everyone else with a few adaptations to everyday life.
A job like all the others. A mum’s life like all the others. For me it is important to be able to continue working and to overcome all this pain and disability. It helps you to move forward and to hold on.
There are harder, darker days, but you can hold on and think that there will be better days.
I manage to take advantage of every little happiness in my daily life.