Thank you for inviting me here today. Spreading awareness of Chronic Urtcaria and what its like to live with is something I feel very passionately about.
I have never spoken publicly before and I’m terrified so please bear with me.
I’ve been asked to speak a little bit about my journey with Urticaria so I’ll start from the very first day I developed symptoms.
Nov 2014 – I was on a family day out with my 3-month-old new baby. I suddenly became very itchy and felt very unwell.
I went to the toilets to check my skin. When I lifted my trousers I found that my legs were almost totally covered in hives. (I didn’t know they were hives at the time.) I called the doctor and asked for an appointment. We ended our day out and I went home to the doctor. The doctor told me I had had an allergic reaction and it would go.
It didn’t go. It spread to every part of my body. From the soles of my feet to my scalp. I went back to numerous doctors who offered me small doses of antihistamine. I saw 5 or 6 doctors at my own doctor’s surgery and 8 different doctors in 3 different hospitals.
5 months later I ended up in A and E. I felt like I couldn’t breathe and the hives had now been joined by swelling to the mouth, eyes, lips and ears. I was put on a course of steroids and told I had to stop breast-feeding my baby. This was one of the hardest consequences of the disease so far. I was not ready to stop feeding my baby but the hospital told me I had no choice. I took the steroids whilst sobbing uncontrollably to my husband.
From that day in hospital, I had hives and Angioedema every single day. It affected every single hour of our day. Every day of my week. Whether I was awake or asleep, the CU was there and although you can’t always see it, I could almost always feel it.
And in those very rare times I couldn’t see or feel it, I was waiting on its return, anxious and aware that at any moment it could take over my entire body.
Even during the rare times, your body is not affected, your mind certainly is. Chronic Urticaria is a disease that takes over your body and your mind. It takes over your life and can change the person you are/were entirely
I have experienced discomfort beyond words, cried myself to sleep night after night and been filled with fear at what is happening to my body. At points, I was taking up to 16 tablets a day, none of which gained any control of my symptoms.
I struggled to maintain my career, to keep my relationship with my husband what it should be and struggled to be the mother and friend I wanted to be.
For the first few months I suffered with the disease I wouldn’t leave my house and couldn’t sleep at night without physically holding on to my husband for fear something may happen to me in my sleep. Chronic Urticaria is a hideous disease to live with and it has affected all areas of my life – my relationships, friendships, social life, work-life.
At times I wished I could literally rip my skin off. The itching was so incredibly intense that I would scratch myself until I bleed. And I only stopped when there was no skin left to scratch. The itching can cover your entire body. I cannot tell you what it feels like to itch from your scalp to the soles of your feet. No amount of scratching or rubbing will ease it. You cannot concentrate on anything because the itch is over-whelming. It is very hard to enjoy life when your whole body is silently itching away and there is nothing you can do about it.
Urticaria affects us all in different ways. My urticaria appeared daily no matter what I did or what I et. I could not make the Urticaria any better but I could make it much worse.
My Urticaria was triggered by any stimulation of my skin. I couldn’t allow any part of my body to be cold.
I often wore 3 or 4 layers and under these layers, I had to wear themo-regulating tights. This made dressing very difficult and dressing for an occasion or ever feeling attractive utterly impossible.
Chronic Urticaria greatly impaired my quality of life. It completely changed me as a person. I lost all self-confidence. I suffered, and still do suffer, from severe anxiety. I was extremely self-conscious and I became uncomfortable in most social situations. Even today I now suffer from social anxiety. I became awkward around others.
As a result of the Urticaria, I stopped sleeping properly. I was so scared that the swelling might affect my breathing and although it sounds dramatic, I had genuine fear that I might die in my sleep.
I laid awake at night waiting for something awful to happen. I woke my husband throughout the night to check I was OK. The Urticaria completely took over my mind as well as my body.
After seeing all the local doctors and dermatologists I paid for a private appointment with Professor Greaves. Within seconds of meeting him I started sobbing. I knew he understood and felt hope for the first time that someone might have the answers. I continued to see Professor Greaves and also Dr Grattan. Both doctors were incredible. The level of expertise, knowledge and care was outstanding. I felt in such safe hands and they day helped me through the worst days of my life.
After what felt like a lifetime, but was actually only 12 months I was given my first Xolair injection. The nurse Keyna was fantastic and she provided a great deal of support to her patients. The results were instantaneous. Within days my symptoms reduced and then disappeared altogether. It was honestly as if the drug was magical. It changed my life overnight.
My first course ended and I then had 2 agonising months of the symptoms returning.
I was accepted for a second course and the results were a little slower this time but after a couple of injections, the urticaria was under control again.
The second course finished, but the symptoms did not return. I discovered I was pregnant. Unfortunately, I miscarried and the symptoms appeared again as soon as I passed the baby.
I was accepted for a third course and this time when it ended the symptoms did not re-appear. That was 12 months ago.
It is hard for me to look back on those days. They were so horrific and my life was so greatly affected. I feel I missed out on a lot of special times with my children; time that I cannot get back. 3 years on and I have been diagnosed with severe generalised anxiety and severe health anxiety. Both started as a result of the Urticaria. I am having CBT and taking anxiety medication.
Although I haven’t had a break out since my last injection I am reluctant to believe the Urticaria has left my body. I still feel the same skin sensations occasionally, particularly if I am cold.
But I am one of the lucky ones.
Xolair gave me my life back. There are no words to tell you how grateful I am to everyone involved in the research and the making of the Xolair drug. And to the doctors that prescribe and administer it.
For three years my family went skiing without me. I couldn’t allow my skin to become that cold. I had to see their holiday through the photographs rather than experience it with them. Xolair improved my symptoms so dramatically that I was able to join my boys on a ski trip to france. I went to the top of the mountain with them and we sat in a restaurant and cheers’d to xoliar, to Dr Grattan, Professor Greaves and to Keyna. I have never enjoyed a drink more!
If you are involved with the drug Xolair or the medical profession in any way, I thank you. From the bottom of my heart I thank you. And my family thank you. You have given my children their mother back. You have given my husband his wife back. You have given me my life back and I am eternally grateful for every day that I get to live my life, Urticaria free, with my beautiful family. Thank you.