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The “Bulgarian Huntington Disease” family: Supported means safe

Is there anything scarier than facing a serious diagnosis? Yes – when one of your loved ones is diagnosed with it. You fall into an abyss of sadness, sink into an ocean of anger and powerlessness, and the abyss of faithlessness is close by. Until you meet them - understanding, supportive, radiant and dedicated: the founders and team of the Bulgarian Huntington Association.

Established in 2014 as a community of support, understanding and care for families affected by Huntington's disease and other rare neurological diagnoses, "Bulgarian Huntington Association" is not just another organization working only on paper. Already in 2015, the association created the first Mobile Center for people with rare diseases, through which it was able to offer real support to people with disabilities from rare diseases in their homes, and two years later the free information-consultative “Center for people with rare diseases” opened its doors, followed by the free telephone support line in 2022. By the end of 2022, the services of the consultation office and the mobile center have been used by hundreds of families with various rare diseases.

Families between suffering and isolation

When faced with the devastating reality of a rare disease, families are plunged into deep mourning and experience intense emotional stress. They feel crushed under the overwhelming burden of the suffering of the disease affecting a loved one, the responsibility to care of him or her on one hand and the lack of skills on the other, the fear of inheriting the disease, isolation, loneliness... The experiences can be extremely devastating and upsetting from the inability to adapt to the challenges of the disease.

Children and young people can be exposed to embarrassment and suffering in many situations, one of which is when their parents suffer from an illness or injury that impairs their ability to provide adequate care for them. Therefore, according to studies, social support can protect them from the many harmful effects that the affliction and suffering can have on short- and long-term health (Hughes et al., 2017; Thompson et al., 2015). Support helps them develop coping skills, better understanding of the dynamics of the disease, and to be informed and educated about the possible prospect of inheriting it.

Supported means secure

"The more information I got, the more confident I felt," says a young man whose parent is affected by Huntington's Disease.

Emotional support can protect young people by building a sense of safety, by reducing the emotional distress associated with a lack of love, lack of security or feelings of loneliness. To build skills on how to provide emotional support to their sick loved one, how to help them share and overcome negative experiences.

Stress and uncertainty are reduced, with the acquisition of skills necessary to cope with all the factors and problems arising from the disease. Developing skills such as self-efficacy and effective communication build the capacity to cope with family challenges.

The “Bulgarian Huntington Association” family

What some of our families, affected by rare diseases, have to say about our support services and joining our inclusive family:

Thanks to the "Bulgarian Huntington's Association" I have improved significantly and am socially active, and my children received information about my disease in the right way

Desislava Dimitrovadiagnosed with Huntington’s Disease

Bulgarian Huntington Association" also provided psychological support to me, my husband and my son, who took a genetic test. I hope that in the future we will continue to receive timely information and that there will be an opportunity for rehabilitation and self-help groups. Thank you for this opportunity!

Dimka Yurievawife of man diagnosed with Huntington's disease and mother of two sons at risk

In 2011, my daughter Nicoleta was born. 4 years later she was diagnosed with the rare disease muscular dystrophy. A lot of fears and few people for support appeared! And families raising children with rare diseases need SUPPORT - moral, psychological, emotional, they need information. They need someone to support them to keep the family whole. Otherwise, only the ONE remains of the family unit. And then you continue the fight alone, you and the child with a rare disease... I am currently participating in the psychological support program of the "Bulgarian Huntington Association". It helped me deal with emotional stress, which in turn had a positive effect on my daughter. Today I am making a plea for help to create a Support Center for Families with Rare Diagnoses! There are still hundreds of thousands of people with rare diagnoses in Bulgaria who need support during and after the diagnosis, both they and their families!

Marianamother of a child with muscular dystrophy
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