Battle Cry

By Nicole, Systemic mastocytosis, Italy, May 13, 2020

Rare Disease Day

April 23th, 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 pain, often also from gastrointestinal problems, I was often limited in movement and therefore I had difficulty following the rhythm of all my friends of my age. Over the years, of course, I got worse, the doctors said they were growing pains but inside me I always knew it wasn't like that, if these were growing pains, what effort was it to grow? Anyway ... Three years ago a twenty minute walk caused me stress fractures to both shins. Obviously for a 19 year old girl it was not normal. Back and forth to hospitals, in the meantime the symptoms worsened, I always started to throw more morale because the doctors could not find an explanation for everything, I even started to think I was crazy. All this hidden from the eyes of people, for those who know me, I know that I’m not a person who expresses themselves a lot, I always laugh and joke even if maybe I suffer, it is my way to "defend myself". Anyway, here finally a doctor from the hospital in Bressanone (Italy) realized my situation, without saying anything he went to a conference / meeting of doctors in Florence on hypophosphatasia (rare bone disease) I thought: this doctor went to Florence for me, why? Well ... in short, he suspected that I had this disease ... he explained everything to me and finally it was a light at the end of the tunnel, I wrote to him crying and thanking him and he replied "Tuscan heart", I will always be grateful for this gesture .. Anyway I started the analysis at the hospital in Verona and Bolzano (Italy), and in the meantime I ran to the emergency room for pains that got worse and worse ... well the results of the tests arrived and I was negative ... the world collapsed on me, that is, I had finally found an answer to all my illness and now I had to start from the beginning? It started all over again, exams, visits etc .. which turned out to be "useless" in a certain sense .. until a hematologist from the Verona Hospital (Italy) contacted me saying she suspected "SYSTEMIC MASTOCYTOSIS" and here we are another illumination, I go to see the symptoms and they matched one by one, I go to the hospital of Verona to make the Hematological visit and to undergo the bone marrow biopsy and other tests to confirm their suspicion.

On December 10th 2018 they called and confirmed everything.

Finally there is an answer to all my sufferings, finally I can show everyone everything I have suffered over the years. I tell my story because I would just like to make people understand that they never underestimate anything and always be close to people despite everything, without diminishing their pain or worries. I wanted to say that after so many years I’m finally happy, maybe I shouldn't be since it’s a rare disease and that for now there is no cure BUT FINDING AN ANSWER TO ALL MY SUFFERINGS FOR ME IS A WON BATTLE. Following my diagnosis of Systemic Mastocytosis, I was also diagnosed with Fibromyalgia, osteoporosis, MCS, POTS. I think as long as we have a voice, we need to make ourselves heard, especially those who have rare diseases that are not yet known, so that people start 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 the next.

 

*Find others with Mastocytosis and Mast Cell Activation Disorders on RareConnect, the online platform for people affected by rare diseases

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