It was getting colder outside, and my fingers turned blue immediately. It was the beginning of the disease, but I did not know about it – recalls Kamila. The diagnosis came late, because even the doctors never thought it was rheumatism. We usually associate it with old age, while some of its varieties reach young people. In addition, in Poland, they have limited access to diagnostics, rehabilitation and biological drugs.
Thirty years old, attractive. Wife, mom. Kamila Kuźma calls herself an “active optimist”. She had been like this for a long time indeed. There it is again. After a break, which was a year taken out of life – ended with the diagnosis: scleroderma.
Nothing foreshadowed this
It is difficult to find a clear cause of Kamila’s illness, about which she found out a year before her thirtieth birthday. Was something disturbing going on with her childhood health? – I don’t remember anything special, neither from my childhood nor from adolescence. I was living normally. Then I got married, set up a company – an online store for artists. Four years ago I gave birth to Wojtuś – he recalls. They took a loan with her husband and started building the house. – It was life in high gear – a small child, construction … – recalls Kamila. But could this be the cause of the disease? Many women her age live at this pace.
In the spring of 2015, Kamila, Paweł and Wojtuś are already living in their own home. Kamila starts to feel weird. – My hands were very swollen, my fingers looked like pumpkins. Opening the bottle became virtually impossible, in the morning I had a problem to pick up the kettle with water – he recalls.
She was terrified. And more and more weak, lethargic, constantly tired and sleepy. In summer, shortness of breath was added to the strange symptoms. Kamila even started to tire of climbing the stairs. She stopped every action to sit down for a moment and relax. Her heart was racing. “For any reason, I started to get angry and cry,” she recalls. Then she fell ill with conjunctivitis. It didn’t go, so she suspected it was an allergy.
Search for a doctor
In August, she went to the first. He ordered urine and blood tests, also for the thyroid gland; he also referred to an allergist (no allergy was found). When it got colder outside, Kamili’s hands began to turn blue. The family doctor said, “Reynaud and Hashimoto.” She didn’t know what that meant and he didn’t explain. She got a prescription for a warming ointment. The doctor in an irritated voice said: “What is supposed to be, it will be, don’t you think?”
After returning home, Kamila started looking for information on the Internet. She found little, returned to the doctor. She won referrals. To a cardiologist, neurologist, endocrinologist and rheumatologist. We managed to get to the first two quite quickly (at the National Health Fund), while the visits to the rest of us meant long months of waiting. She went privately. The visit to the neurologist calmed her down. The head tomography showed nothing disturbing. The cardiologist said the EKG was normal. The endocrinologist diagnosed hypothyroidism, ordered further tests for Hashimoto’s, and prescribed medications. Until finally she went to a rheumatologist. – When the doctor saw the results of the tests, she immediately sent me to the hospital. I was shocked – recalls Kamila. In the hospital, a series of tests: blood and urine, re-ECG, heart echo, chest X-ray, capillaroscopy, Schrimer test. Heart and lungs – good results, while capillaroscopy shows abnormalities. Kamila hears “extravasation and mega capillaries” and “limited systemic scleroderma”. It doesn’t tell her anything. He is afraid because he does not know what to expect.
Scleroderma found on the internet
“Hardening of internal organs – the heart and even the esophagus. It can lead to death “- Kamila learns from the Internet. He cries the night, thinks he will die soon. He is afraid that his son will be orphaned.
Scleroderma is a serious disease of the immune system, connective tissue and bloodstream; rheumatic disease. It is chronic and incurable. It means the deposition of an excessive amount of collagen in the connective tissue, skin, joints, internal organs. It leads to hardening and fibrosis of the skin, as well as internal organs, and can be fatal.
After leaving the hospital, Kamila starts taking seven different medications. Two months is on a dairy-free diet. It is a little better. Winter comes, and with it, deterioration. A short walk means sore fingers. And while driving a car, my entire hand is bluish and painful. Because Kamila has to drive with gloves (it happens that in two pairs), although she would prefer without them to hold the steering wheel more securely. – I restricted my exit from the house. I take my son to kindergarten, do some quick shopping and come back. There are better days and very difficult days. I know I can’t go sledding with my child, make a snowman. Skiing has become unreal. Knowing it will never end overwhelms me. I keep asking myself, “why did this happen to me ?!” There is no answer. Dr. Google “says” the cause of scleroderma is unknown. And maybe it’s genes, maybe the action of chemical compounds, such as trichlorethylene or resins, or maybe viruses are to blame. Anyway – something makes the body rebel and fight its own tissues.
Support group
On the Internet, he goes to the National Association of Young People with Inflammatory Diseases of Connective Tissue “Let’s get together”, he contacts Monika Zientek – the president. After a few talks, Kamila sets up a Facebook profile called “Systemic sclerosis – let’s get together 3”. He pulls himself together. He undergoes three weeks of rehabilitation, his hands are more efficient. In fact, Kamila can say that she was lucky in misfortune. Monika Zientek, president of the “Let’s get together” Association says that Polish patients with rheumatism have limited access to diagnostics, rehabilitation and biological medicines, and these are the most effective. – The question “Why me?” more and more often I replace it with “maybe it has a deeper meaning?” – says Kamila. Sometimes the fear for the future comes back, the fear of death or orphaning a son. Wojtek is not yet five years old. – Then I cling to the thought that I want to show him the world. Every day I tell myself, “I only had a difficult year. Already behind me. I will not give up!”
Check: Laboratory diagnosis of some rheumatic diseases