Ms Lorna McGreehan:

There are lupus support groups but because of the nature of the illness, one is exhausted. People who are working and who operate the lupus support group are lupus sufferers. We cannot, therefore, always be the best advocate for ourselves and we cannot always advocate for others because we are all struggling day by day. The lupus support group does struggle and we are constantly relying on the kindness of strangers to donate to try to keep things going because it is funded by the members. That is difficult. I also work with the National Council for the Blind of Ireland which has been a wonderful organisation to work with. It is absolutely fantastic. I am currently doing an introduction to braille online course. Those services it has provided have been great. I am lucky to have the support of the NCBI with me. Again, those types of people are great but they are not always there.

I mentioned the lupus support group. It is difficult, but things have changed with social media. I was 17 when I was diagnosed and now, with social media, I have access to groups all over the world. That has been a complete eye-opener for me. I can discuss medication and so many things with my peers all over the world. Lupus mainly affects women and ethnic groups; black women are often affected. Are we the people who are forgotten about?