On March 8, 2021 – Women’s Day, ELPA organized ‘Successful women in ELPA’s family,’ a talk dedicated to highlighting some success stories of women involved in ELPA. It was the occasion to listen to some inspirational stories inextricably linked to patient advocacy, liver disease, and patients’ associations. The event was live-streamed on the ELPA Facebook page.
However, ELPA would like to continue raising awareness and share a positive message on this topic. Thus, it decided to turn the event into 6 written interviews featuring all the guests available on the ELPA website.
FIFTH EPISODE – SIXTH EPISODE
Sindee Weinbaum, representative of the ELPA Member Hetz, the Israeli Association For The Health Of the Liver, and the ELPA Working Group leader on Rare Liver Diseases
ELPA: Sindee, what is the burden a patient with a rare disease has to carry? Do you think it could be more challenging to deal with these kinds of conditions from a woman’s perspective?
Sindee: When you have rare liver disease, people cannot see it most of the time. You always look perfect. It is something invisible. You do not look sick, some symptoms don’t show up, and people do not understand. However, the disease is there. Women definitely have an extra burden when they have rare liver disease. As women, they have to be a mother, a wife, a friend, a colleague, and do everything that is expected of them and handle the bumps in the road that having a liver disease can cause.
E: I know you are more and more involved in paediatric rare liver disease advocacy. From your perspective, what are the most prominent obstacles families have to face when it comes to this scenario?
S: There are many obstacles, for sure. In these families, the attention shifts entirely to the sick child. And if there is more than one child, parents have to deal also with the fact that who is not ill can feel kind of abandoned. All of this is incredibly difficult to balance. One of the children needs undoubtedly a lot of time and attention. This is the reason why support groups are so important. We create some in Israel primarily dedicated to parents with children with paediatric rare liver diseases. They have people to speak with, share their experience, ask for advice, and get in touch with people going through a similar experience. They need support as caregivers. They need help when their children participate in a clinical trial or have to face a transplant.
We should also focus on the fact that mothers are usually expected to be the person entitled to caring, the caregiver, which means additional work and stress.
E: How was the support group for PSC’ers in Israel created?
S: I was diagnosed with PSC in 2009 after being ill for over 18 months and suffering quite a bit. I was suffering from being sick and handling the bureaucracy, different doctors, and no answers. After all of this, I decided I had to do something to help others who were suffering to not go through what I had gone through.
I started a support group for PSC’ers in Israel with another couple, and we joined forces with Hetz a little while later. After starting with only four of us, today, we have hundreds of members. We are in touch with associations from all over the world and a very active support group. We also started a support group for PBC and have developed support for paediatric diseases, as I told you before. Besides this, we are working with NASH patients. I also help patients as a patient advocate on the road to transplant.
I believe that what I do helps me stay well and alive.
E: What is your approach towards patients who ask for help?
S: I have a motto. My motto is “living life alongside the disease instead of focusing on the disease.” Do not let the disease control your life. Keep going. It takes time for people, for patients, to start this small revolution, but they usually get there, and it helps them to keep their lives as normal as possible.
E: A wish for the future…