Sandy’s Story
Hello! My name is Sandy Leerberg, and I am fortunate to be a friend of Judith Calder's. We met in 1991 when I attended school for several months in England. Jude and I became very close friends over the next couple years, and have visited back and forth between England and the US since first meeting... I have so many stories that I could tell, because, as you all may or may not know, Judith is not only one of the most intelligent and dedicated women I have ever met, she is outlandishly funny and irreverent as well...We have shared some of the best laughs, in person, via Skype and via email that you could imagine. I'd share some of them here (and almost did Judith) but some things are just not the same in the repeating. Her friendship is priceless, and I guess you could say that one positive thing about Degos is that it has enabled you all to meet her, and that is a true gift...But I digress...
Judith and I were in close contact by email (I live in Pennsylvania) when she first noted a 'strange rash.' Being a nurse of many years, I have to admit that I didn't give much thought to it until she began to seek a medical opinion for her increasing 'spots.' I can't describe the sinking feeling that I got when she communicated the diagnosis, and referred me to the scant but terrifying information available on the disease. Stories of her journeys to London to see top specialists, complications developing as many lesions became infected, hospitalizations (related to Degos? not really known...) all presented themselves as serious worries to me and my family here...So far away and so little that seemed to be able to be done.
But I had not taken into consideration the intelligence and determination of my dear friend. Over the past several years we have watched her organize and motivate, making true headway into finding information on and, possibly even a cure for this mysterious disease. She can be very bold, and won't hesitate to call anyone or drive/fly many hours just to meet someone who might contribute information to the subject. (We've been on many a road trip!) We celebrated the wonderful response that she found in the first conference in Berlin, and some of the encouraging news has been discovered since then.
But once again I feel her frustration (one I am sure is shared by you all!) that, especially since the conference in Boston, things seem to have become a bit stagnant. How can we keep this issue alive and interest in finding a cure a priority?
Sharing information on the very existence of Degos with family, friends and those that might be inclined to support the 'cause' financially is one way. Continued participation in this site seems to be another, as I know that Judith (and I would guess most of you!) gets so much from communication with those who are involved with Degos. When I think back to the day when Judith was informed of her diagnosis and the paucity of information and interest in the disease that existed then, and compare it to what is now possible with the groundwork that has been laid, it is at once encouraging and frustrating...With (relatively) so many patients in contact it seems that greater understanding of the disease and a possible cure may be at hand...So close and yet so far away. Interest and research need to continue to move forward!
As friends and family, we too feel a frustration. I almost never allow myself to think about the possible grave nature of the disease, but instead focus on the incredible group of people who are working in many capacities to find out more. Especially my dear friend. I cannot imagine my life without you, Jude...You bring so much to it in a million different ways. I'm afraid that I must insist that you prevail over this disease! If you or anyone else has any ideas on how I or anyone can keep the cause alive, please post it on this site. Thank you!
Page last modified on 22 September, 2008
