Deby Atkinson

Mine is the most bizarre story of NF. I lost my Dad, Dr. Stanley Sorkin, to NF in 2003. (His dedication has been posted on the website for a few years). Having spent a long time researching this incredible disease and trying to coming to terms with the vicious way in which my Dad was taken by this tenacious disease I thought that I finally understood all that was involved with NF.

In October 2006 I was diagnosed with meralga paresthetica (trapped nerve) in my groin that had been causing some pain for a while. This required a routine operation to release the nerve. This was done at a private hospital on the Monday and was a complete success. I went home with a hairline mark from the surgery with dissolvable stitches and a dressing. Due to the nature of the surgery I was not allowed to drive for a week, so worked at home. I felt great for a couple of days and was delighted to be pain free.

On the Thursday night I was sick and felt quite unwell so went to bed early. On the Friday morning after a restless night I woke up in agony and had a high temperature. I managed to get into the shower and proceeded to change my dressing. Upon changing my dressing I noticed that around the wound area was red and felt hot to the touch. I work in healthcare and I immediately realised it was infected. The obvious thoughts of my God it can’t possibly be NF rushed through my head but then I quickly dismissed it thinking that it could not be possible, my Dad died of NF, it is so rare and unheard of that I couldn’t possibly have it as well.

I rang my surgeon’s secretary and my husband rushed home from work. We went straight back to the private hospital. By the time I arrived at the hospital I couldn’t walk and was in absolute agony, feeling very unwell. I had to go into the hospital in a wheelchair. The surgeon saw me straight away. It was the same surgeon that had cared for my Dad, and is one of the few surgeons in England familiar with NF. As soon as he saw the area he said it was infected and insisted that I was put on IV antibiotics. He marked up the area. I asked him if it was NF, he reassured me that it was cellulitus but I’m sure that he suspected NF but couldn’t believe himself that this God forsaken disease could hit twice in the same family.

I was admitted to a private room and overnight watched the red area grow, the pain increased, I developed an incredible thirst, I was pumped full of antibiotics and morphine and had all the same symptoms as my Dad. By lunchtime on the Saturday I had become delirious and my body had started to go into toxic shock. The surgeon revisited me and made the decision to take me to theatre to see what was going on. We all knew in our hearts that it must be NF. In my state of delirium I knew I was dying and knew it was NF, I kept seeing my Dad and telling my husband that NF was going to beat me.

I was taken down to theatre and the first debridement was done. I was critically ill at this stage. Following surgery the surgeon went and broke the unimaginable news to my husband that it was NF. He told my husband that he did not know if I would make it but he did not want me to know that I had NF. The surgeon believed that in knowing would cause me too much stress. My Dad never knew that he had NF. I was rushed by ambulance to ICU at the main local hospital. The following day I went down to theatre for the second debridement and then again the day after. At this point the surgeon was sure that he had managed to get it all. He had debrided from my groin, pelvis, leg and stomach. I remained in HDU and then transferred to the specialist’s plastic ward. I remained on IV antibiotics for a week.

I was discharged with Vac therapy and stayed on the Vac for seven weeks returning to the plastic dressing clinic three times a week. About two weeks after I got home the nightmare started again, the pain, a temperature and the thirst. I went straight back to the hospital, another week of IV antibiotics in hospital. The Vac therapy worked wonders but I still required skin grafts which I had done two months later. I am now waiting for an operation date to remove the skin grafts and have direct closure.

I still have pain but I’m alive. I often think how lucky I was that I had a surgeon who knew and understood NF and that I had personal experience of NF. I have asked so many people if there is any record of two people in the same family developing NF and if there can be any genetic links, but to date nobody has any answers. There are so many people who are misdiagnosed. I stressed in the dedication for my Dad that a much greater understanding and awareness of NF is needed throughout the medical profession globally and I strongly believe that this is still the case.