Practice

Commentary: Patient’s view

BMJ 2009; 339 doi: http://dx.doi.org/10.1136/bmj.b5178 (Published 10 December 2009) Cite this as: BMJ 2009;339:b5178
  1. Andrea G
  2. with the support of Reinhard Reuß
  1. Correspondence to: R Reuß reinhard.reuss{at}neuro.med.uni-giessen.de

    In March 2006 I was in the prime of life, happily in love, and 14 weeks pregnant, and the last thing I expected was that this would suddenly be snatched from me. I started to get pain in the area around the upper part of my back. Within a few weeks I found myself unable to walk. I couldn’t understand what was going on. How could my condition have worsened so drastically? What if treatment didn’t work?

    I was appalled by the results of my magnetic resonance imaging. Even though I worked in a medical profession, I could not come to terms with them. I had a lot of support from my family, my friends, and my partner at that time, which gave me a lot of strength. At the age of 22, I didn’t want to be looking at the world from a wheelchair. That’s why I kept on fighting.

    The second attack happened when I was seven weeks pregnant. Once again I had this tingling and everyone said, “You’re imagining things because you’re afraid.” But then everything began to change at an alarming rate.

    I didn’t find it quite as bad this time—I’m not really sure why, but probably because I knew that nothing could happen to the baby as a result of the plasma exchange and nothing else would help. And the last time everything had sorted itself out.

    I was 20 weeks pregnant when my waters broke early and I lost the baby. I thought my world had fallen apart. Two weeks later I was made redundant, which was another slap in the face.

    At this point I was in deep despair. I still had no exact diagnosis, was 80% disabled, unemployed, had lost two children, and felt like I was on the scrapheap at the age of 23. What is there left to shock you?

    I was still having relapses, and then in the summer of 2007 I had two within the space of three weeks. I had no time to recover, and even my eyes were affected—it was ghastly. The doctors were worried and advised me to have treatment with rituximab. What else could I do, even though I had previously resisted going down this route?

    Today, I can say that it was a good decision. I’ve already received two units: after the first one I went nine months without a relapse, and I’m hoping that after the second dose I will go even longer without a relapse.

    And so my life has changed dramatically. I have become stronger, and I know—no matter how hard things may be for me in future—there are people who are there for me. I will never give up the fight.

    Notes

    Cite this as: BMJ 2009;339:b5178