The story of Jasminka
We fly like butterflies
– Let’s sting like bees
Rare Disease Day is just around the corner! As February 28 approaches, I have more and more motivation to say why we, why we are aware of the disease, why we are loud, united, united and clear in the direction for a better life for people with a rare disease?!
The goal of the Rare Diseases and Disabilities Community is to encourage discussion about the issues and problems of this group of individuals and families.
Life with a rare disease and disability is full of thought-provoking questions, insights and perspectives.
How would I define myself, someone like me?
We’re all one happy HIPPY GROUP trying to do some good in the world!
I live, we live with a bunch of chronic diseases that THINK they can stop me/us!
What I and anyone else living with a rare disease can do is let the readers FLOAT LIKE BUTTERFLIES too!
If they accept the challenge and don’t understand, they will understand why we can STICK LIKE BEES.
Many stories started since childhood, many wrong diagnoses to get to the right one, many children with diseases for which there is no cure, expensive medicines, struggle to reach the one whose source of life has dried up, broken families due to non-acceptance of the situations, isolated families, young girls carrying the disease who give up motherhood precisely because of the risk of genetic inheritance of the disease, families with the genesis of the same problem…
LIFE WITH CHALLENGES AND MORE!
A chronic and rare disease leads to the transformation of a person if there is good psychological support first in order to accept it and learn to live with the disease.
Being RARE, accepting the facts, being a WARRIOR, a SURVIVING FIGHTER, it’s all part of the struggle of my/your RARE WORLD!
Precisely because IT IS RARE TO BE RARE, we all know the value of life and are happy to vote for a better world for EVERYONE!
We expect those responsible in society to give us their support by solving the problems and NOTHING less than that!
The more rare disease advocates can amplify each other’s voices, the greater our SUCCESS.
When communities of different groups of rare families join forces, unique and united, it can lead to greater awareness for all, better results in efforts.
Rare voice of the patient.
That is not so rare!
Ask us something?
I, on the other hand, will not talk about my rare world, BUT I will put the #MOTHERS #FIGHTERS of children with rare diseases and disabilities on a pedestal.
They are the #PRIDE of a society!
Just a happy hippie, artist, mother, grandmother diagnosed with Acromegaly and many other accompanying diagnoses, bladder cancer, medically able to work, not retired, active volunteer and ambassador directing her focus to advocating for rare, chronic diseases and disabilities!
🟣”Give your hand before it’s given to you”
🟢”Playground of dreams – life of dreams for every child
🔵 “Donate, recycle, make happy” – Humanitarian store
🟣”Lights for the rare”
This is my story:
.I would first start my story as a person with acromegaly.
I wouldn’t know where to start with the story, when the disease started because from my earliest childhood I was a child with reduced immunity and very often inflamed kidneys. I grew up in hospital rooms, receiving a Depo-pen injection every 21 days due to frequent infections and reduced immunity. At the age of 22, I was diagnosed with diffuse euthyreotic goiter, and I taking 100 mg of Euthyrox.
I had the most problems with my heart, increased heart rate and very low blood pressure that could drop to 30/60.With the death of my mother in 2001(i was 31 years old) the condition suddenly worsened. The blood pressure was approaching 90/100, then it started to climb to 120/180. I had terrible tachycardia and arrhythmia. I started getting swelling, pain in the joints increased, I was lying in bed and I felt like I was running high.The problems continued and the condition worsened. Sometimes dull and sometimes unbearable pains that did not subside even with trodon injections in the left part of the head were constant.In 2002, for the first time, I was referred to an endocrinology clinic in Skopje.
Although in my amnesia I pointed out the constant headaches, the increased volume of the body by 10-15 kilograms, stiffness and pain in the joints, I was left without rings on my hands and had to buy bigger shoes, problems with my jaw. The clinic dismissed me by canceling my Euthyrox drugs, as if I had overdosed on them. For a whole year after that, I went for check-ups, I was in the hospital when my condition worsened, but there the endocrinologists said that now I am completely fine and that all the findings and hormones are fine.The endocrinologists said that I was fine. I used to get such insensitive answers. When I noticed that I had galactorrhea and told the endocrinologist Dr. Chedo Dimitrievski, at that time the director of the Clinic for Endocrinology, answered me like this:
🔴”It’s nothing terrible, don’t let your husband squeeze you by the chest!
When I complained to him about my headaches, I got the answer:
🔴”I have a headache too.”
About the enlarged kidneys, the nephrologist gave a report:
🔴”Maybe I have two kidneys under the same capsule.”
At the endocrinology clinic, the professor gave a report:
🔴”I had an enlarged heart, I have improved a lot, that I should walk 5 kilometers a day.”
After all this, after my condition for which I did not receive anything concrete, I asked my general doctor to give me a referral to take an MRI of the head.The radiologist discovered that I have a tumor on the pituitary gland, he states that all the problems originate from it, but that it is important for an endocrinologist to tell what kind of tumor it is.I was overjoyed, finally something concrete. An 8×8 millimeter tumor on one pea (pituitary gland) with so many functions like orders for the whole organism and many nerve fibers didn’t seem scary at me. It was important that I finally had something to solve!But for a short time happy!
🔴Endocrinologists said that it is nothing, incidentaloma!They told me that if I became obsessed with the disease I would end up in a psychiatrist!
🔴The endocrinologists in Macedonia assured me that it was nothing, that I should not go abroad, where they would take my money privately, and then there would be no one to fix my hormonal system!
My luck was that I had relatives in Serbia, my aunt was a radiologist, and my mother’s brother in Slovenia. My mother died two years ago, in hospital conditions, and we still don’t know today whether it was a blood clot, an effusion or what. My relatives they helped me a lot to go to Slovenia, Ljubljana, where I was diagnosed!Dr.M arija Pfaifer,endokrinologist told me that I have acromegaly, given therapy Bromergon 15 mg a day until surgery by an experienced neurosurgeon for transvenoid pituitary surgery.
On July 23, 2003, I underwent surgery in Belgrade at the VMA ,Dr.Branislav Antic.I have been in remission ever since with follow-up MRIs of a 2 mm pituitary tumor.I still have many health problems today, I don’t take anything to control the growth hormone that can rise from time to time, heart problems, arrhythmia and tachycardia, headaches, many bone diagnoses, disc herniation, curvature of the spine, ulcers , car, herpes, pain in the joints and fingers. My teeth were completely extracted at the age of 34 and I had 9 surgeries on my teeth. In 2021, bladder cancer was diagnosed, which was removed in 2022.
Here I do not mention the situations categorized as “Z”, stressful situations with deaths.
💙Macedonian healthcare is at that level, Macedonian protection as well. I have no protection here, I don’t even know if I am registered in the Register of Rare Diseases, and as a long-term volunteer for raising awareness of rare diseases, I know many people, especially children who do not are registered in the same. I do not have a categorization of my work ability, and I have been rejected for disability pension several times, including 6 months ago. For the authorities in Macedonia, I am a completely healthy person!
For not anyone to go my path, I’ve been fighting for 10 years to raise awareness about rare diseases!
The first thing I learned is that I don’t need a doctor who is overbearing and you can’t tell him anything because he knows everything!I didn’t know anything about illness, but from my family doctor I took all the books on medicine one by one, especially internal medicine, I looked on the internet for everything I could find about my condition, seminars, pharmaceutical research. I learned to be my own advocate of rights, I леарнед medicine using myself as a laboratoryen mouse!
People die because of improper diagnosis.
*When you are admitted to a hospital in Macedonia, a doctor from primary health care who is in specialization comes to your room and takes your history. Such a wrong course of diagnosis. He may be meeting someone with specific problems for the first time, he is looking to learn about himself. and maybe for the first time he is facing such a situation!
*What irritated me a lot were the words of Dr. Cedo Dimitrioski, who told me that I would end up seeing a psychiatrist if I became obsessed with the disease. From what I learned from medical books, I understood that it is quite the opposite, that the endocrinologist should first refer you himself of a psychologist to learn to live with a chronic or rare disease!
*Doctors here are investigated for bribery and corruption, they will not refer you abroad! There is no functional Registry of rare diseases, the prevalence of mistaking you as a person with a rare disease is 1 in 100,000 people.
*There is no registry of rare diseases, there is no foundation that will cover people with rare diseases.
*There is no cooperation between the clinics, there is no team that would guide you, everything takes place on a campaign basis. They can give you a referral to another clinic, come back with a result, but mutual cooperation does not exist.
*Many people with disabilities have no protection, there is no one to point out their rights, nor to tell them that it is probably one of the rare diseases.
*People with a rare disease need protection of all kinds for a quality life as much as possible!
Employers want healtEvery obstacle I encountered in my life became a signal light for people with rare diseases!
Every obstacle I encountered in my life became a signal light for people with rare diseases.And just writing my story here is an appeal to you to help find a bridge of connection between you and the doctors in Macedonia! I deeply believe in that network.
My book “Challenges of my rare world” writes a part of my life with an emphasis on the opportunities in recent years that we here in Macedonia face in all areas of life.
would be protected and have the right to a disability pension.People with a rare disease live with continuous stress! It further endangers health. You go for a check-up and wonder what the outcome will be, you have additional expenses for treatment, constant pressures at work if you are absent…
*People die because of improper diagnosis, lack of medicines, lack of cooperation or sending to institutes for a specific diagnosis. And there are few rare diseases that have a cure! There are many people with disabilities who do not know that they are rare in the world!