Lauryns was sick almost constantly for two years: “Doctors even began to suspect that I was simulating”

Immunodeficiency is a complex condition in which a person’s immunity, for one reason or another, does not work as it should. There are about 300 people suffering from it in Lithuania.

“When the immunity, the most important policeman that protects the body, does not work properly, a person remains as if naked. Naked not only against infection, but also against diseases, viruses, diseases that are not related to immunity at first glance. A person is sick non-stop, illness makes life almost impossible, difficult, half-hearted.

Doctors usually do not find the cause, or it takes quite a long time. If we knew the cause or at least in which direction to go, it would become clear that the immune system can be cured or compensate for what is missing so that a person can live fully”, – a member of the board of the Lithuanian primary immunodeficiency society “Imunas” described the serious illness.

Nothing unusual appeared until adulthood

Lauryns said that he lived a normal life until adulthood and did not stand out from his peers in any way – maybe he was sick with viral infections a little more often.

“I didn’t have any major illnesses, maybe one or two more times a year than normal people, children, but I didn’t stand out in any way,” he said recently during a press conference.

“There was constant bronchitis, pneumonia, you get sick just when another student sneezes in the corridor. It went on like this for about two years – you get up as if you feel normal, go to university, after half a day you have no energy, you’re sick.”

However, everything changed drastically when he entered the university – the boy began to be seriously ill all the time.

“There was constant bronchitis, pneumonia, you get sick just when another student sneezes in the corridor. This went on for about two years – you get up as if you feel normal, go to university, after half a day there is no energy, you are sick. That state of flu haunted me for about two years,” Laurynas recalled.

The doctors even began to suspect that they were simulating

He said that two years later, one might say, thanks to a happy accident, he was sent to immunologists.

“They did research and discovered that I just don’t have immunity to a certain group. And because of that, it kept happening to me. Although before I visited doctors, they even began to suspect that I was faking it – after all, how can you be sick so often?

I just took antibiotics for one, two, three weeks and nothing changed – the exact same flu condition remained. Maybe after a month you start to feel normal and then you stay again for three days, a week, in the summer maybe a little longer – a month, and again “catch up” with something. You need treatment again, it doesn’t go away like a normal person in a few days,” the man taught.

I had to stay in the hospital for 100 days

After getting into the hands of immunologists and determining the real cause of Lauryn’s ailments, life became easier. True, it was necessary to go to the hospital for a short time every month.

“Initially, I was prescribed drugs that I had to inject into a vein in the hospital – I was simply asked to lie down in the hospital one day a month, where the drugs were injected throughout the day. They also have certain side effects, the body resisted – and the bones were bathed.

So after injecting them, you may be less focused for a few days, but later you can live a full life, diseases don’t stick so easily, and when you get sick, when a normal person takes medicines and antibiotics and they work for you – a week, three days and you recover”, the man was happy.

He said that now there is an additional drug that he can inject himself into the abdomen, subcutaneously:

“Now there is no need to go to the hospital to inject those drugs every week. Over the course of 10 years, I was in the hospital about 100 times a day. Now I’m a very rare guest here.”

The man opened up that it was not easy to go through this whole path after learning the diagnosis. “I also had to experience such a psychological state, when when a disease is diagnosed, you deny it at first, you say to look for something else. Then you get angry, why is this happening to me, and depression has started. Finally, reconciliation comes, you can’t escape from it, let the disease take care of me”, smiled Laurynas.

Typical patient history

Allergist-clinical immunologist at VUL Santaras clinics, prof. Laura Malinauskienė claimed that the story just told is very typical.

“We have a lot of such patients. Lauryn has a form of primary immunodeficiency. What is it? This means that a person is already born with a certain genetic disorder. These are the genes that are responsible for the cells of the immune system, its products and functions, which do not work very well.

If a person is born with several genes malfunctioning or one that regulates a lot of things and the immune system malfunctions, such a person gets sick already in childhood. In the case of a severe form of combined immunodeficiency, the symptoms appear before the age of 1 year.

But if the damage is not so great, a person can live for a long time and even in adulthood the first symptoms appear. Since the cells of the immune system are very “friendly”, if some are not working so well, others try to help. Therefore, the disease clinic is very diverse,” said the doctor.

Manifested not only by frequent infections

The professor said that a person suffering from immunodeficiency can often suffer from severe, unusual infections.

“There can also be common pathogens, especially dangerous bacterial infections, but a person cannot recover from them in any way. It can also be other diseases, for example, malignant, some blood diseases occur more often in those who have immunodeficiencies”, explained L. Malinauskienė.

According to her, certain diseases related to the immune system can also occur: “From that tension, the immune system starts to damage its own body.”

The doctor emphasized that since immunodeficiency can manifest itself in various disorders, it takes a long time to diagnose it.

It is noted that the vigilance of family doctors must be the highest, so that they refer to specialists in case of any suspicions. “If something is unusual, strange, other diseases are difficult to treat, such a patient should be sent to a specialist,” emphasized L. Malinauskienė.

Recurrent sinusitis, pneumonia, diarrhea warn

The head of the Primary Immunodeficiency Center of Kaunas Clinics, doctor allergist-clinical immunologist Edita Gasiūnienė pointed out that in daily practice such patients are usually not so much from family doctors as from other specialists – ear, nose and throat doctors, pulmonologists, gastroenterologists.

“This happens because, as mentioned, immunodeficiency can manifest itself in difficult-to-treat infections, but also in sinusitis – two or more sinusitis per year in the absence of allergies. Several pneumonias may occur in a year, or one pneumonia may occur several years in a row.

“Children, in preschool age, it is normal to get sick up to 7-8 times a year. But if you need antibiotics every time, this is not the norm. In adulthood, it is normal to have uncomplicated upper respiratory infections 2-3 times a year. If you get sick more often, it’s complicated, you need antibiotics every time, you should consider that it’s time to check your immune system,” said doctor E. Gasiūnienė.

There may be frequent diarrhea that seems to never end – therefore very often such patients are fully investigated for inflammatory bowel diseases. There may also be serious infections in other areas, abscesses that need to be opened surgically, antibiotics are needed to heal,” the doctor said.

Also, severe infections – encephalitis, meningitis, sepsis – of which even one episode is enough, would also lead to suspicion of immunodeficiency.

“It can also appear in diseases that do not seem to be related to immunodeficiency, because it is not an infection. Perhaps attention should be paid to patients with cytopenias, certain connective tissue systemic diseases such as systemic lupus erythematosus”, said E. Gasiūnienė.

At the same time, she reminded how often it is normal to have uncomplicated upper respiratory tract infections during the year.

“Children, in preschool age, it is normal to get sick up to 7-8 times a year. But if you need antibiotics every time, this is not the norm. In adulthood, it is normal to have uncomplicated upper respiratory infections 2-3 times a year. If you get sick more often, it’s complicated, you need antibiotics every time, you should consider that it’s time to check your immune system,” advised the doctor.

Is immunodeficiency curable?

According to L. Malinauskienė, a diagnosis of immunodeficiency is not always a sentence.

For example, if a severe disease is diagnosed at a very young age, a bone marrow transplant can be performed and the child will be cured for the rest of his life.

“If the disease occurs at an older age and there are no complications yet, we can compensate for the deficiency of the immune system. In Lauryn’s case, it is blood products, so it is very important to be a donor, because blood products are used to make medicines for people with immunodeficiency,” explained the doctor.

Doctors point out that it is very important to recognize the symptoms of primary immunodeficiency, and if they appear, contact a doctor as soon as possible.

“It is important to detect this disease before complications develop. Because if a person often suffers from infectious diseases, they also leave a damaging effect on the organs, for example, the bronchi may collapse and the lungs may no longer be as efficient. Therefore, the task is to determine it as early as possible, before irreversible changes occur”, L. Malinauskienė has observed.