Today, 29 February 2016, is the International Rare Disease Day. In the building of the Department of Social Welfare of LRSA, the Charitable Foundation of “Sister Delilah” held the event “Early diagnosis. Detection of pulmonary hypertension” within the project “Early diagnosis of pulmonary hypertension in Lviv region “, which was launched 22.12.2015 at the Lviv City Council and is supported by the American Association of pulmonary hypertension (PHA) and Tom Lantos Grand.

During the event volunteers and social workers gained knowledge about rare diseases and, in particular, pulmonary hypertension and its symptoms. The following attendees said the speech:

– Yaroslav Bordian, director of Lviv Regional Center of Social Services for Families, Children and Youth;

– Oksana Kulish, President of LCCF of “Sister Dalila”;

– Andrew Goulet, lawyer of LCCF of “Sister Dalila», PHURDA;

– Gayane Akopyan, MD, Professor, Deputy Director of Research, Head of Clinical Genetics of SI “Institute of Genetic Pathology of NAMS of Ukraine”;

– Christine Semen, MD, Associate Professor of Internal Medicine of Lviv National University named after Danylo Halytsyi.

Kulish Oksana said: “Society should support patients, and we should speak loudly about the issue because it exists. Patient organizations, physicians, scientists, pharmaceutical companies and officials must unite for improvement of patient access to treatment.”

Gayane Rubenivna familiarized listeners with rare diseases which, unfortunately, bother Ukrainian families. She said that those diseases are transmitted through genetic heredity or mutation of genes. If you know your genealogy and what illnesses had your predecessors, you can protect yourself from serious diseases by prevention. She urged patients’ organizations, doctors and social workers to unite.

Christine Semen described in detail what is pulmonary hypertension, how this disease occurs and what drugs help to fight it. She advised relatives of patients to get screening every six months.To get an early diagnosis you need: to suspect – to identify – to confirm – to classify. Nowadays, there are 12 approved medicines from pulmonary hypertension. She also compared patients with PH with sea slick at sunset: they look calm outside, but nobody knows what happens to them and their body inside.

Andriy Guley urged to care about people around us and, in case you notice them having symptoms like shortness of breath, fatigue and swelling of the limbs, not hesitate but see a specialist to diagnose the disease as soon as it’s possible.

After getting interesting information, the guests were invited to take a photo of all attendees and have some snacks. The hall was filled with friendly atmosphere. People, united by pulmonary hypertension, made friends with each other. It helps to be in good shape and gives strength to fight for life!

Hence, thanks to the American Association of pulmonary hypertension (PHA) and Tom Lantos Grand we have the opportunity to make a difference towards improving access for potential patients with pulmonary hypertension to diagnosis, and subsequently to treatment to reduce disability of population and improve their life quality.

It’s an honor for us to implement this kind of project here, in Ukraine. It’s a result of cooperation between CF of “Sister Dalila», PHURDA and American Association of pulmonary hypertension (PHA).

The project is not limited by any boundaries, as it combines social workers of Lviv and Lviv region to overcome information barriers, access for potential patients with pulmonary hypertension to early diagnosis and treatment. After all, the person goes to the physician only if necessary but social workers systematically accompany families, which have limited access to early, correct diagnosis and treatment !!!