The story of Catarina
A RARE DAY
Today, February 29, a rare day, is also the day chosen to remember rare diseases.
In the European Union, it is considered a rare disease that one that affects less than 1 in 2,000 people.
Each one has his own struggles or sympathizes with certain struggles … In addition to fighting for the protection of the Planet, I fight for the awareness of autoimmune diseases and rare diseases.
I have lived with a rare disease since I was 6 years old. Today is the day to talk about it!
In childhood, spots appeared on my skin that later became hard and atrophied some muscles. Linear scleroderma, a rare autoimmune disease. Fortunately, I was affected by the form of the disease, which is not fatal. (Systemic scleroderma affects internal organs and can lead to the patient’s death).
I had physical therapy almost all my life and I often take anti-inflammatory drugs to relieve the pain that I have at the skeletal muscle level. As a result of this muscular atrophy, I also have serious spinal problems. The joints hurt daily and especially when I’m standing in the same position, making movement very difficult when I want to move. Being in bed all night should be a positive moment for our body … yes … in my case it is not. Sleeping is very good, but when I wake up and start to move, joint stiffness is very detrimental to the start of the day. By the way, think about what your mood would be like if you always felt pain, every day, every second? We end up getting used to it, but we can’t say that we got to the point of being okay with it. There are better days and worse days but there is no well being. Never! Imagine an irritating sound, like the refrigerator, for example, but that never stops … we stop listening to it, because we get used to it … but there is something that irritates us … because the sound is still there … always. ..chronic pain is like that!
By the way, there is a tendency for those who have an autoimmune to have anemia, lack of iron (with all the symptoms it causes), in addition to being always more tired because their body is always fighting something that does not exist. The difficulty in getting pregnant also happens often (related to anemia) and the tendency for other autoimmune disorders to appear is also greater. Usually, who has one will have several autoimmune disorders.
I was lucky because my diagnosis was really good. I have always done everything in my life and I even consider myself to be physically successful despite having practically no muscles in one of my thighs. I swam for 10 years with daily training almost the same as competition swimmers and I was part of the high school volleyball team. Curiously, I never took advantage of this physical problem to have a pantry for physical education classes, when the time to change clothes in the dressing room it was the time when I had to hide more. 😉
Of course, I didn’t get spared of ugly names in elementary school and in high school … when I changed classes there was always the time when someone found out, spread the news and some fool was bullying me. At the university they didn’t do it this way, other comments are made, the ugly names are spoken softly and there are strange looks towards the “cripple”.
But…
As I said, I was lucky because I can do everything I want and my body has proven that it does much more than expected. In addition to having traveled a lot, with many difficult hikes, I have already done the Braga-Santiago Way and, despite the pains, I did it at the same time as other people.
Today is the day to talk about rare diseases and that is why I am giving my testimony.
Although I had a good life because I wasn’t that physically affected, what I want is others to put themselves in the place of someone (or some others) who has a disease that nobody knows (sometimes even the doctors) and that often it’s not visible. This affects the interaction with the people around you because they do not believe you have a problem and often criticize the fact that you have pain or indisposition or whatever the pathology brings you. On the other hand, rare disease means no research is justified, much less the search for a cure. It also often means that there is no medication suitable for the particular symptoms of that problem, or, unfortunately, no medication. It means expensive consultations, medication and exams. It often means having to stop working and not having support. It means most of the time depression (the connection autoimmune – depression has been proven) by the uncertainty, hopelessness and sadness that accompany these human beings.
Put yourself in the place of someone who lives like this every day. Be empathetic. Pay attention because most of the time the person doesn’t even talk about the problem to avoid being judged (negatively).
On a rare day for everyone, it was defined that it would be a day to remember rare diseases, because there are those who suffer from a rare disease … every day … not only on this rare day for everyone.
Catarina. February 29, 2020. Braga, Portugal. Planet Earth 🙂