Dimka Dimova

My husband’s Huntington’s disease was triggered by COVID.
All relatives should get a genetic testing in order to be able to take timely measures.

Statistical data indicate that one in twenty people has a rare disease. Hence, the information campaign dedicated to the struggle of rare disease patients to get timely diagnosis and treatment is called “The 20th Hero”. It is organized by the National Alliance of People with Rare Diseases and Takeda, a biopharmaceutical company. [1][2][3] Two of these heroes live in Pazardzhik: Yuri Dimov, who has Huntington’s disease, and his wife Dimka, who is his carer. Dimka Dimova is telling us about the challenges of living with this rare neurodegenerative disease.

Mrs. Dimova, when and how was your husband diagnosed with Huntington’s disease?

Yuri and I married 40 years ago. In 1986, at the age of 25 he showed symptoms of Huntington’s chorea. But then we thought that it was a mental disorder because the symptoms were depression and psychosis. He was admitted to St. Naum Neurology and Psychiatry Hospital in Sofia for treatment. Yuri’s symptoms improved and for several years he was managing his condition with medications. We were in college then and we had only one child at the time. Because of his condition my husband had to take a medical leave of absence and graduated a year later than expected. Then he started to work as an engineer. Although he didn’t have any obvious symptoms, I started noticing that his behavior was odd at times, with frequent mood swings and depressive episodes.

Around 2000 my mother-in-law was diagnosed with Huntington's purely by accident. She fell down on the stairs in front of their house. We thought she had a stroke, but Dr. Mihaylova, a friend of ours, who is a neurologist, came to our place to examine her. She was with her for half an hour and at the end of the visit she was certain that my mother-in-law didn’t have a stroke. It was from Dr. Mihaylova that we heard for the first time about Huntington’s chorea. My mother-in-law lived for ten years after that. My husband had a genetic test in 2012 and it turned out that he is a carrier of the gene.   

When did the choreiform movements specific to the diseases first appear?

I noticed that Yuri was jamming on the brakes while driving. He alternated stepping on the gas with stepping on the brakes… These were the first signals that his disease was progressing. My elder son, who is an IT specialist and works in Germany, came home for Christmas. He learned that anyone who wished could undergo a free-of-charge screening test for Huntington’s at the neurology department of Alexandrovska Hospital. So, the test showed that Yuri has the faulty gene. My elder son’s test was negative, which was a relief. We have another son, who’s working in the UK. He is afraid to get tested for fear of what the results could be. We do not want to put pressure on him, but it’s better for him to undergo the test.

How is your husband now and is he able to work?

Ten years ago my husband became a teacher in IT and computer science. However, during the COVID pandemic his school was one of the first schools in the country to close down due to the large number of infected students and teachers. My husband had mild COVID; we even had doubts it was COVID because he didn’t have the typical symptoms. He had diarrhea, vomiting and high-grade fever. He didn’t cough and he didn’t have a runny nose. It turned out it was indeed COVID because the antigen test he underwent later on showed he had antibodies. After four days everything was over, but then his health rapidly deteriorated, and this time it was related to Huntington’s. He is still on a sick leave, but when it ends, the school will fire him. He is incapable of teaching anymore.

Did any medications that can stop or slow down the disease were prescribed to him?

My husband gets occasionally hospitalized at the neurology ward for treatment under Dr. Zhelyazkova’s care. The chorea has significantly decreased, but his other symptoms worsened. His intellectual abilities are extremely reduced; he is apathetic, drowsy and tired; he almost never leaves home; he has lost the will to live; it is as if he is living in some kind of fog.

How do you manage financially?

I work for a private company and I am earning a living for both of us. I cannot afford to stay at home and care for him. It’s very difficult. For the time being, he is able to stay at home alone. He does not go outside our home and he does not get disoriented. He has good days and bad days. Sometimes he has lucid episodes. Thank God, his condition is still not severe. He was assessed by a medical disability expert commission and they determined that his degree of disability is 75%; however, he is not able to support himself with the disability pension he receives. His pension is enough to cover only his medications. The medication that suppresses the chorea is cheaper now, but there was a time we had to buy it for 70 euro from Germany. The truth is, if it weren’t for our sons, we wouldn’t be able to make both ends meet.

What advice do you have for all who are newly-diagnosed with the disease?

The sooner you take measures, the better. That’s why the children, the parents, every member of the family should get tested for the gene. Also, it is very important for the carriers of the gene to get vaccinated against COVID because the infection triggers and aggravates Huntington’s symptoms.

[1] National Alliance of People with Rare Diseases: https://rare-bg.com/?page_id=17       

[2] Nguengang Wakap, S., Lambert, D.M., Olry, A. et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet 28, 165–173 (2020). https://doi.org/10.1038/s41431-019-0508-0

[3] Rare Disease Day Information Pack. EURORDIS Rare Disease Day Website. http://download2.rarediseaseday.org/2020/infopack-2020.pdf. Accessed on December 9, 2019.