English
In connection with Erica Rimlinger
In my annual physical examination in spring 2002, my blood tests did not result in completely normal results. “His liver function is not great,” said the doctor. “Let us give it a year, and if there are still no normal results, we will do something about it.” I didn’t think much about it. He had no symptoms that were worth taking into account. Of course I felt tired, but isn’t that the case of most people?
The following year, when the results of my blood tests were suspicious again, my doctor called me and left a message in my work. I wanted me to seek myself to see if I had hepatitis. She was surprised and very confused: she had no risk factors. I was sure that my doctor had made a mistake.
A few months later I started working in another company. I had to wait to have my new health insurance coverage and hadn’t worked enough time to ask permission to go to the doctor anyway.
However, health problems do not always occur at comfortable times in terms of insurance cover or permits. One day in my new job I had a stomach episode that held me in the bathroom for 45 minutes. There was so much blood that I thought I should bleed internally.
As soon as I restored my serenity enough to return to my desk and call my doctor, I had to ask all my new men’s colleagues: “Can someone take me to the hospital?” There was panic. After discussing who had the keys, which hospital would go and who would call my parents, one of my colleagues drove his car at the head of the building and took me quickly and sometimes in the wrong direction. Try to stay calm in the middle of the entire chaos, but inside it was totally of fear.
In the hospital, the tests showed no key to the cause of the episode. They told me that I should plan a consultation with a gastroenterologist, i.e. a doctor GI. I had the advice the week before Christmas and said to myself that I thought I had primary bile pussy or CBP. As part of the diagnosis, the doctor asked for a liver biopsy to confirm it and said that in his 30 years he saw only another person with this disorder.
What was the CBP? My mother and I started crying in the car outside of the doctor’s office and carrying out Internet search inquiries with our telephones. I read that I may need a liver transplant and that the CBP would reduce my life expectancy. I didn’t know if I would live or how long. We do not give it to anyone until the celebrations. I didn’t want to ruin Christmas.
The biopsy confirmed that I had CBP and occupied a medication that was available for me for many years for CBP.
Some people have symptoms that give way to the diagnosis of CBP, but for me it wasn’t. After diagnosing me, however, I started to experience a difficult diarrhea, which made my normal daily activities impossible. A memorable incident made me crouched under an umbrella in the rain on the side of a highway under an umbrella. With the help of my husband and my relatives, I handled it and finally managed systems and tools to deal with this difficult situation. With the hope of improving my health, a surgical revascularization was subjected in 2007, in which I thought in an unrealistic way that weight loss would be useful to solve all of my liver problems. It wasn’t like that.
2022
I stopped concentrating my energy on unlikely fantasies and understood that I should live with my illness and not just survive. I started with the meeting of former students in my school, which was about to be the agreement. I was very shy in the high school: I did not take part in activities and was very reserved. But now I have understood that I should change. I offered help in planning the meeting and the meeting committee gave a new award this year: the Mariposa Award. I won it through my transformation. I knew I would go in the right direction.
I started my activism that I still do today. Every year in February of each year I go to the Capitol to work for remedies of rare diseases. My goal is to do as much as possible every year until there are rare diseases without healing.
After a while, the CBP medication, which had taken for many years, stopped working as well as before, and the results of the blood tests showed that my liver function deteriorated. My gastroenterologist retired, but with other people who live with CBP, I found a doctor who prescribed a new medication that turned out to be good for me.
Then the FDA [Administración de medicamentos y alimentos] He took some measures that influenced my ability to maintain the medication. I used the skills that I recently discovered that I had advocacy and activism when I testified in favor of medicine before the FDA. According to the audience, the FDA has implemented steps for which the medication is available. They listened to me.
My experience with an unusual chronic illness learned to find the good in a difficult situation. Now I hope that there are new discoveries with which this disease can be better understood. I want more people with CBP know that they have therapeutic options. There is no healing, it is true, but you can make plans.
You can enjoy your life and be an integral person, not just statistics. I have CBP, but this disease does not define me and I am not defeated by this situation. Lying with an unusual chronic illness was useful to discover security and trust in myself that I did not know before.
This educational resource was created with the support of Gilead.
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