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Living with Hidradenitis Suppurativa: How You Can Help
What does it mean to say that a disease is genetic? Why are we conducting genetic studies of Hidradenitis Suppurativa? Why do we need help from thousands of people with HS ? All good questions. Some answers here.
Hidradenitis suppurativa, also called HS, is a skin condition that causes repeated outbreaks of painful boils. Even though many people have HS, it has not been well-studied. Because of this, there are many unanswered questions about what causes HS, how best to manage it, and if it is possible to prevent it.
Our group is trying to change that by conducting genetic studies. By studying DNA from thousands of people with HS, we can identify patterns that help us to understand what is causing HS and may illuminate new ways to treat it.
The success of genetic studies is directly linked to the number of research participants willing to donate DNA. Thousands of participants are needed. Your participation is vital for the success of this work.
If you are interested in participating in a genetic study, please speak to your dermatologist today to find out how. In the event that you are not able to access a genetic study through your dermatologist, you can consider participating in one right here.
Are painful skin conditions really just skin-deep?
Researchers at Columbia University are trying to better understand causes of hidradenitis suppurativa, with the hope of discovering new cures for it.
Genetic Studies help to improve our knowledge about diseases. Many research participants are needed for a successful genetic study.
Participation is easy.
Click here to take our Skin-Deep Survey.
Here we explain why our group is so excited to be conducting genetic studies of HS and what our preliminary work is telling us.
Listen here
Click here to take our survey,
More than Skin Deep: Investigating the Psychosocial Burden of Hidradenitis Suppurativa
Study for Adults living with Hidradenitis Suppurativa
Are you aged 18 and above and living with Hidradenitis Suppurativa (HS)? If so, you are eligible to take part in the following study.
This research is being done as part of a partnership between UCD, St. Vincent’s University Hospital (SVUH) and HS Ireland. The members of the research team are Drs Varsha Eswara Murthy, Niki Nearchou, Paul D’Alton, Barry McGrath, and Prof Brian Kirby.
What is this research about?
Early research and anecdotal evidence have shown that HS impacts many areas of psychosocial functioning; mental health, well-being, social functioning, relationships, sexual functioning, and work. However, there is limited evidence that looks at all these areas and how they may be related to one another. This project aims to build a psychosocial profile of people with HS and examine desires related to the provision of psychological supports for people with HS.
Why are we doing this research?
We are hoping to use the results of this research to help practitioners and researchers get a better understanding of the psychosocial impact of HS, with the aim of using this research to aid in the future development of psychological supports for those living with HS.
How to get involved?
This study involves completing a 25-minute online survey. If you would like to participate, please click here.
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