“The more I can share about my situation, the better, because maybe I can get help that isn’t available at the moment.”
Introduce yourself the only person to fall ill in all of Italy. Inherited from your father, who died from this pathology. Imagine being diagnosed at just 30 years old, in the prime of your life, whether social, work or romantic.
Alice Palmeri, originally from Cecina (Livorno), will turn 31 in December. It has YouTube channelevery Friday he posts a new video where he talks about the past week and the disease in general, “which I nicknamed Maleficent“
Alice and Maleficent
Alice, why such a name, which, it seems to me, resembles the film of the same name?
“I’m a big Disney fan. Those who do not know the history of this name may think something negative, but in fact it is not. Maleficent (the main character of the films, played by Angelina Jolie, Ed) is actually a magical creature with beautiful wings.
His first love cuts them off out of jealousy; she loses her powers, suffers greatly from this loss and plans to take revenge: to kidnap the daughter of this man, the king (this is then the tale of Sleeping Beauty).
As an adult, if, on the one hand, she fell in love with a girl, cut off from her parental affection, she decides to fight the monarch, returning the stolen wings with the help of the princess and returning to becoming one of the most powerful. creatures in the world.
Now it is true that they were not taken from me by my first love because in fact he was the one who gave them to me by helping me along the way and marrying me. But, let’s say, when I was diagnosed, it was as if my wings were taken away from me, I was a dancer, I taught dance…
Therefore, my intention on my life’s journey is to regain my wings and become strong again.”
So what is this Maleficent disease?
“I have spinocerebellar ataxia SCA 1. There are many of them, and they are all very rare as genetic diseases. In particular, SCA 1, either no one else showed up in Italy, or at least I’m the only one who has it.
Essentially, this is a disease that affects the cerebellum, which is the main “engine” of balance: this was the first symptom, I have difficulty walking.
When we are children, we learn to speak, walk, swallow, and this basic information is “recorded” as natural actions thanks to this organ, so much so that we do not have to relearn it every time.
With my illness, I no longer have this function of the cerebellum, so I have to use my memory. For walking, there is physical therapy, which helps me a lot, but it is very difficult to perform even normal gestures using only memory.
Even when swallowing: liquids come out to the side, I need to be careful with the techniques I was taught to prevent this from happening (for example, I should avoid still drinks, prefer carbonated drinks).”
The only one in Italy
Is this a hereditary disease?
“My father passed this on to me. Unfortunately, doctors couldn’t figure out how he got infected because my grandmother died young (at 60) and so even if she developed symptoms, there was no way to know. Also because this disease, even in the rarest cases, occurs after 80 years of age.
I was told that it is almost impossible to pass it from father to daughter: however, the case in a million is me. The gene is the same and the doctors told me that if it is passed on there is a 50% chance of it happening.
I fall into this percentage. My father had his first symptoms when he was 35, and I started when I was 30.”
How and when did you come to the diagnosis?
“I noticed this because I was walking poorly, looking for support and safety when I walked. Even my mother, who had already experienced my father’s illness from the very beginning, saw that I had the same problems, the same difficulties, even in articulating words.
There are days when things go better and other days when things go worse, I have to struggle more, I’m slower.
I was diagnosed about 5 months ago, everything went quickly. The doctor in Milan only had to examine me, even without the result of a genetic test, to give me the answer: “This is a rare disease, your father had it 30 years ago (he is the only one in Italy), and I have been studying it since then. I assure you, you have it. He presented this to me as an undeniable fact.
And so it was: the genes are identical to my father, my chromosome is broken, my DNA is also of a different length and there are all the specific medical features.”
Are there treatments?
“Not right now. I’m getting a lot of help from physical therapy and speech therapy, so even swallowing and breathing are activities that I do normally now, but have to pay a lot more attention to.”
It’s as if I had to work every day, putting into motion what I remember, doing the same thing I did before; so in the evening I am exhausted from fatigue.”
Marriage and secret dreams
Let’s get to the good stuff: how did you meet your future husband?
“I met Francesco through my cousin, who lived in Florence and came here to San Pietro in Palazzi to visit him on vacation. And so we met. We’ve been together for nine years.
When he found out about the illness, the first thing I apparently said to him was, “As much as I love you, I wish you would leave me so I could be happy.” Instead, he got angry and replied, “Let’s do this, I’ll marry you so we can be together forever.”
He is the most important part of my life, it helped me a lot to have such a positive person next to me. This is my strength.”
And how do you cope with this “forced coexistence” with Maleficent?
“I know it’s there, I can’t make it go away or change anything, but I know that I need to be mentally healthy, that everything depends on me. Anything that I have been told that I cannot do in the future, I believe that I will simply do differently. Therefore, this thought gives me courage and strength to move forward.
I was a dancer, Italian champion for six years: something positive in my body, albeit hidden, was clearly present.”
You working on now?
“My partner and I have a wine shop in the village, but I had to stop working due to my condition. I’m only a 1% partner, I stay in the store for whole days, but I can’t work anymore.”
Can you tell us about some of your hobbies?
“I already mentioned dancing and Disney, and they are the main ones. Then travel, I would like to travel the world, so even on my honeymoon I will take the California-Florida road because I love natural parks and I love walking.
I know my illness makes it difficult for me, but I will also crawl on my elbows to explore the world, which is my biggest dream.”