Meet Erika!

My name is Erika. I’m 27 years old and I live with my boyfriend in Fredericia, Denmark. I was born with a bad liver, a narrowing on my heart, hearing impairment, a high forehead, deep set eyes and a prominent chin. Daily, I am itchy over my whole body. My illness is not something I see as a problem as I’ve gotten used to it after so many years. I was diagnosed at 14 years old.

I received the disease from my mother, who unfortunately died in November 2015. I have 2 other siblings who also have it. My younger sister has many of the same problems as I have, but it has hit her harder. Nonetheless, two years ago my little sister had a child and she (my niece) does not have our illness. My older brother was born with the same symptoms as I was but has fewer effects today outside of his hearing impairment.

My Boyfriend and I have been together for several years and are planning to have children. Due to my Alagille Syndrome, we have had to make some extra considerations with how we would like to establish a family.In our case, we are fortunate that in Denmark, they offer egg-sorting to people with chronic diseases as part of our health care. This means that doctors can take my eggs out, fertilize them and check if it has my illness. It’s a lengthy process and can take up to 2 years before we have a child. Right now, we are on a waiting list that is 6-12 months long. All this wait, study and more will be worthwhile if I can have a child without Alagille Syndrome.

My Mother used to be the one to fight for my illness and me. Since she passed away, I have learned that I sometimes I know more about my illness than the skilled doctors I meet on my journey. This means that I often have share my knowledge about my illness with my doctors. It’s not always easy and sometimes it’s hard to fight the system but it can be necessary and it is worth it.

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“Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.”