A woman has shared how her rare birth condition was left undiagnosed for 13 years – with doctors often treating cases with abortion.
Kulikova Olesya, 27, suffers from a rare condition known as situs inversus totalis, an abnormality which is characterised by a mirror reversal of the essential organs.
Since birth, she has also experienced a range of health issues which have landed her hospital, such as pneumonia, bronchial asthma and intense stomach aches.
As her condition is very rare, with cases only occurring in one out of 10,000 people, medics were unable to correctly diagnose her – until March 2009.
Throughout her teens, there were indications of the condition such as her heart being shown on the right instead of the left during routine examinations.
“I was 14 years old when I found out that my heart was on the right and at 18, I found out my liver was located on the left,’ Kulikova, from Achinsk, Russia, told NeedToKnow.online.
“In 2019, I was in hospital with pneumonia when they told me that my lungs were located in a ‘mirror’ [fashion].
“Every time I go through a medical examination, I have to explain that my heart is on the right, not the left like all people.
“I don’t have tattoos, documents or jewellery which could warn doctors if I lose consciousness.
“During electrocardiograms, a test which checks the heart’s rhythm, [I have to tell] doctors to place the electrodes on the right.”
Due to her condition, other health issues have been difficult to detect and treat accurately – with another genetic condition slipping through the radar until last year.
She said: “In 2021, an immunologist diagnosed me with kartagener syndrome, a hereditary condition which causes difficulties moving debris and fluid from the lungs.
“Because of this, I’ve had pneumonia four times and as I have bronchial asthma [too] I have shortness of breath and a constant cough.
“In April [this year], I went to the hospital because I had a stomach ache and when I told the doctor [about my condition] he suggested that it was appendicitis.
“Turns out, this was urolithiasis, also known as kidney stones.”
In a bid to treat her conditions naturally, she started going to the gym where she hopes to help her lungs “work properly” and so far, has found breathing easier to do.
She claims that this “anomaly” is studied very little in the medical field and that as a result, many detected cases during pregnancy are often treated with abortion.
Kulikova said: “I met a girl who gave birth to a boy [with the condition] and she told me that when she was pregnant, doctors said there was a chance her child wouldn’t live after birth.
“[If he did survive] he would perhaps be disabled and she was later offered to have an abortion.
“As doctors rarely meet this type of scenario, they assumed that the baby would die – but she had a healthy baby, which I call Miracle.
“In another case, the child was born with their heart on the right and had a defect, but he underwent surgery and now has a completely healthy heart.”
Kulikova is the only person in her family with the condition and doesn’t currently have any children of her own.
However, she hopes to spread the message that those with the abnormality can live to adulthood and that they’re not alone.
She added: “I admit, I was embarrassed that I had situs inversus totalis – but I started to blog and people from all different countries wrote to me.
“Most people often ask questions about my health and many find me by hashtags where I offer support.
“Of course, everyone hopes that their children will live happily ever after with this anomaly and I’m convinced that we can lead a normal life.”
