My name is Kamila and I only want one thing- to live. If I have a break in my treatment, I will die. Every moment counts for me as I no longer have time. My health is no longer serious- it is severe. Sometimes it is a challenge to hold a glass of water… I need help!
or many years, no smile came from my lips. I woke that smile up through helping others. I was a laughter therapist: Doctor Peach with the red nose who drew kisses on IV drips and cared for young patients so they could be happy. There is nothing more beautiful than a child’s laughter- especially the kind that only knows the reality of hospital walls. It was a fantastic feeling and incomparable to anything else- helping. Now, I have to beg for help myself. Sometimes I do not remember how to laugh anymore- I only feel pain.
Illness was with me at birth, waiting to attack, lurking like a shadow. It is genetic and extremely rare- PHP type 1, pseudohypoparathyroidism. While the disease may have “pseudo” in it, it is very real. PHP is caused by abnormal genes and this causes my body to be resistant to the parathyroid hormone (PTH). This means that that my body cannot regulate the level of calcium in my body. Supplements, hands pierced from calcium shots, and intravenous calcium didn’t solve my problem. Type 1 secondary myopathy, hypothyroidism, benign adrenal tumors, Fahr’s syndrome, pineal cysts, and epilepsy all come along with PHP type 1.
The disease is like a domino- when one element falls, as does the next. Do you get painful cramps in your calves when you sit for too long in one position when you lack magnesium? Imagine that pain, but lasting all the time. That pain covers not only my legs or hands, but my entire body. There are no words to describe how much it causes me to suffer.
The disease is unpredictable. A year ago, I was having convulsions and losing consciousness which was accompanied by severe headaches and photophobia. In May, my health deteriorated and the number of attacks increased. Currently, thanks to medication, I have managed to stabilize the situation. Unfortunately, the treatment cannot be stopped and I am breaking down because the costs of these medications exceeds my financial capabilities.
It is only thanks to extraordinarily strong painkillers that I am still able to walk, eat, and speak. Usually, they don’t work. On top of this, I have to go to continuous rehabilitation (almost every other day). If I stop, I start to have problems doing basic tasks- getting out of bed, combing my hair, or doing anything around myself. The pain is as enormous as the cost of medication. I am searching for help- but it’s much more difficult than you would think! Right now, there are no other methods and this is my only option.
I can’t count on two hands the number of times I have been told that I cannot survive. These are words no one should ever have to hear. I have dreams! One of which is to go to the sea and listen to the sound of the waves. I managed to fulfill this dream but, unfortunately, I could not leave my illness in Krakow. I have other dreams, too. I dream that I’ll be able to live a normal life. I dream about a little normality- that drinking a glass of water will not be a challenge, but a normal activity. I want to live, but the price of living is high. How much is a life worth? Mine is valued at 4, 000 Zl (around 1,390 CAD or 1060 USD) a month…
The terror and despair I face everyday is overwhelming. What do I do? Where do I get the money from? There is no more laughter in my life- only fear. Will I have enough to heal myself? Will I survive? Friend and family support me, but even they sometimes don’t know what to say. I know one thing: I will not give in and will fight every day. I want to live. Without you this won’t happen. I’m in a bad situation, but I’m not giving up and I’m asking for your help in ensuring I have enough to fight another day. I want so badly to laugh again…