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From invisible to visible

After years of having her symptoms dismissed, Nicole Calvani, has a diagnosis of systemic mastocytosis, a boyfriend and is trying to pick up on her lost education. This is Nicole's story

April, 2017: It all started like this, or rather, it made everything worse like this ...

Since I was a child I have suffered from muscle and bone pains, often also from gastrointestinal (GI) problems, which the doctors said were growing pains—if these were pains of growth, what effort was it to grow?

For years they have referred me to many psychologists, they said that I only wanted attention because my parents were divorced. Then three years ago a twenty minute walk caused me stress fractures to both tibias. For a 19 year old girl, I knew it wasn't normal.

Nicole in a hospital bed having tests

After visiting hospitals, I started to grew really down because the doctors didn't understand me. Then finally, a doctor from a hospital listened to me, without saying anything he went to a meeting of doctors in Florence on hypophosphatasia.

For me it was finally a light at the end of the tunnel.

I wrote to thank him and he replied "tuscan heart", I'll always be grateful for this gesture. I started tests at the hospital in Verona (Italy). The tests came negative, the world collapsed around me. It started all over again, tests and visits.

Next, a hematologist from the Hospital of Verona contacted me saying she suspected "systemic mastocytosis", I was sent to the hospital for a bone marrow biopsy to confirm it.

On December 2018 my diagnosis was confirmed.

Finally there is an answer to all my sufferings. I tell my story because I would just like to make people understand that they should never underestimate anything and always be close to people despite everything, without diminishing their pain or worries—and believe in our symptoms.

I wanted to say, that after so many years I'm finally happy, maybe I shouldn't be since it is a rare disease and one, that for now, has no cure, but finding an answer to all my sufferings, for me, is a battle won. Following my diagnosis of systemic mastocytosis, I was also diagnosed with fibromyalgia, osteoporosis and other problems.

I think as long as we have a voice, we need to make ourselves heard, especially those who have unknown RARE diseases , so that people get to know us. This is my opinion, there are those who are more reserved and there are those who want to shout out to the world their story, their wounds, their experience, perhaps to help others.

Unfortunately, in past years I was unable to finish high school, I was sick and concentration was not possible (my illness also creates cognitive problems). This year I started school again, I'm doing well, over the years I have learned to listen to myself. I have learned to have self-esteem. I have a boyfriend, this boy has always been close to me, he knew about all my problems, and despite everything, he managed to show me a beautiful future that we are now realising.

Nicole and her boyfriend together in Rome
Nicole and her boyfriend together in Rome

Some people answers are often "ah but you don't have the face of someone who's sick" "blessed are you who don't have to work all day". Anyone who suffers from a chronic and debilitating disease like mine knows very well that living with these types of diseases is like doing a double job for us. We live our days trying to stop our symptoms with medications and therapies, to try to find a positive point in many negatives, get out of bed and try to appear in public with a "decent" face and not one who may not have been able to sleep because of its symptoms—we`ve "been liquidated" from various doctors who perhaps know practically nothing about it, dismissed with excuses because the disease is so RARE.

It is difficult to get out of bed in the morning and try to get used to your "new normal" or better "new life", it's difficult to accept that often we can't do things that healthy people of our age can do, make a trip where in our suitcase they're aren’t more meds than clothes. It's difficult to accept that wherever you are, if the hour calls for medication you have to take it, otherwise the symptoms worsen so much that you end up in the emergency room.

I always say, we try to help make these diseases invisible to visible so that each of us receives the right support and the right understanding.

Just because you don't see something doesn't mean it isn't there.
Never stop dreaming - Nicole on rare disease day holding a heart shaped balloon

Written by Nicole Calvani


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