Patients’ Stories

Testimonial – Patient no.1

I was referred to Dr. McBride by my GP in 2006. I was 26 years old and had suffered with acne consistently since the age of 15. Having tried every medication a GP can offer, with very little success, Dr. McBride was my last resort. She put me on a course of Roaccutane, which within weeks cleared up my acne completely and now six years later I am delighted to say that I have had no recurrence of the condition and am enjoying life with a clear complexion. This line of treatment however, is only half of the reason I am happy today.

Through her thorough investigation on my first visit, Dr. McBride realised something that I believe is a factor in most skin condition patients, and definitely all of those I have had personal contact with. Indeed the outwards signs are one problem but the long term effects of a skin condition psychologically are considerable. In a world where people are judged all the time on image and especially during the teen years when acne is most prevalent, the effects psychologically can be very damaging and long reaching. When one suffers with acne, it is the first thing that one thinks about on waking and the last thing at night. It can get to a point where a ‘good day’ is determined by one’s opinion of whether the skin is less or more damaged than the day before. Spread this kind of thought pattern over 10 years and unsurprisingly, new ways of thinking that are extremely counterproductive are the outcome. With just a glimpse of my psychological outlook on how I viewed the world in relation to my skin, Dr. McBride referred me to Alexandra Mizara, a CBT therapist in the same hospital. Over the course of a year, with applied CBT techniques, she remapped the way I thought about my life and rooted all the negative feelings about myself, most of which were unrelated to my skin issues but the direct cause of why I felt they were such a big problem in my life.

My conclusion about the use of CBT alongside the traditional medicine prescribed is as follows. The medicine alone would have been useful in clearing up the skin complaint but would have left me no happier as a person. My whole psychological make up had been driven by my skin complaint to a point where I was habitually behaving in a way that was detrimental to my progress in life. Had I not been treated psychologically alongside the traditional treatment, with newly clear skin, I would have transferred the negative rule making to something else in my life, possibly affecting others around me but definitely damaging to my own experience. I cannot separate the two forms of treatment. One part was the medicine I took orally and the other was the talking therapy. I needed both drastically. Skin complaints cannot be viewed purely as a visual problem. They have a massive effect on the psyche and the effects are long lasting, long after the outward symptoms have disappeared. It is my opinion that it would be irresponsible not to provide psychological treatment alongside that of medicine, when dealing with skin complaints of this nature. I have never used the NHS for a skin issue since and consider myself cured and I have the facility at The Royal Free Hospital under the care of Dr. McBride and Alexandra Mizara to thank for that.

Testimonial – Patient no.2

The impact that the ustekinumab trial and subsequent treatment has had upon all aspects of my life is probably immeasurable in real terms but I can only describe it as life changing. Prior to the trial, over a 20-year period, I had run the gamete of treatments for intractable psoriasis: from numerous creams and ointments, right through to cyclosporin and methotrexate, with all the associated and undesirable side effects. Looking back, it is almost impossible to believe that after 2 injections of ustekinumab, my skin was clear and has remained so for over 18 months.

This has had an enormous effect on all aspects of my life: physically, I no longer have sore, painful lesions; emotionally and psychologically my self-esteem has rocketed; professionally, I can do my job without worrying whether people are looking at my skin; practically, I can wear T-shirts/go swimming with my children/enjoy the summer. In short, I now feel that I am no longer described or viewed as “the lady with the awful skin” but on other, more legitimate terms.

When you have suffered from a chronic skin disorder for over 20 years you do, of course, learn to live with it – there is effectively no choice. However, entering into a trial where aspects of care are carefully managed by a team of professionals, and a hugely supportive Clinical Nurse Specialist, has demonstrated that I can move forward in my life and my skin is no longer a priority, or even an issue. As I said: life changing.

Testimonial – Patient no.3

I had been suffering for nearly 7 years from severe psoriasis until I met Dr. McBride a couple of years ago. At the time that I was finally referred to Dr. McBride, I was covered with psoriasis patches on nearly 90% of my body – my face was soon getting patches as well and that was hugely depressing and embarrassing. I had tried topical ointments, traditional medication, creams, weird soaps, oils and even methotrexate (which caused me to get quite terrible side effects) with no success when I came across these new biologic injections that some of the psoriasis forums were talking about.

It was during one of my appointments with Dr McBride that I asked if I could be put on any of the biologics. At the time, she mentioned to me that I wouldn’t qualify and that the best way to proceed was to continue the methotrexate. However, when I came back for a follow on appointment a couple of months later, she informed me of a medical trial with ustekinumab that was being carried out by the Royal Free Hospital under the watch of Dr. McBride and Sister Annie. Dr. McBride asked me if I would like to participate, I said yes, and as they say – the rest was history.

Within 2 injections on the clinical trial, my psoriasis went from nearly 90% of my body down to 5-10%. By the end of the trial I was completely clear of all patches. I have been on the medication since the trial ended over a year ago and I couldn’t recommend it more. Dr. McBride and Sister Annie have literally given me my life back and I can’t thank them enough for getting me on the trial, especially since I would not have qualified otherwise. I probably would still be going through the chemo drugs and be leading, what I would qualify as a terrible life. The clinical trial was a great way for me to get the drugs I wouldn’t have got otherwise – and I do hope that I have contributed in a small way to helping others through my participation.

While I appreciate people might be apprehensive about becoming a “human ginny pig” so to speak, as long as you have a good doctor you trust, I would recommend participation in clinical trials. It can really turn your life around and you would always know you’ve helped scientific research – instead of simply benefiting from it.

Testimonial – Patient no.4

Anna first developed eczema at the age of one. It was mild initially, just red dry skin on her cheeks which didn’t bother her too much. Then with no warning, at the age of eight, her eczema suddenly exploded. Her skin was extremely dry and constantly itchy. Many areas were bright red, and the condition was a torment to her. She scratched until her skin was raw, leaving blood stains on all her clothes and bedding. The evenings and nights were the worst. We would all be tired, and the daily battles over bath times and moisturiser were utterly exhausting. Anna would scream and fight to avoid the moisturiser she desperately needed; we still have greasy palm prints on the walls as a memento of her misery. We lost an au pair because she interpreted our insistence on applying the treatment as child abuse. Anna had trouble sleeping because of her itching. I sat for hours beside her bed at night holding her hands as she slept to try and control the scratching. The sound of her nails tearing at her skin was enormously distressing.

Initially we had difficulty getting enough cream on prescription from the GP, as they underestimated the amount of treatment we needed. This changed once Anna had been seen at the Dermatology department at The Royal Free, where the severity of her condition was recognised. She has been on immunosuppressive treatment for over a year, and once we found the dose and medication that suited her, things were much better. She is now 12, and has been off her tablets for over 6 months. I am optimistic that the worst is behind us.

There are many challenges in dealing with a skin condition such as eczema. One is that most people underestimate the effect it has, on the affected individual and on the rest of the family. Many people have a friend or relation with eczema, and give conflicting and often incorrect advice based on their individual experience or prejudices. There is a common perception that eczema is due to an allergy, and therefore easily controlled by avoiding certain foods. Another is that steroid creams and ointments are dangerous, while in fact they make a huge difference and can be safely used as part of a treatment plan.

Any research that can lead to a greater understanding of what causes eczema, and how it can be treated more effectively, will have the most enormous impact on the lives of many people. Do please support Dermatrust in this work if you possibly can.

Testimonial – Patient no.5

Dr Catherine Orteu BSc MD FRCP is a member of the Lysosomal storage disorders team. Dermatrust has helped fund some of the research into skin manifestations of Fabry disease. Here is a patient testimonial about Fabry:

Fabry, my journey so far.

From about the age of eight I started to experience pain in my hands and feet. It was a burning pain that never seemed to go away. Sometimes the pain was very intense, usually accompanied by fever and would last for a few days. These episodes would be so painful that I found it difficult to walk or pick things up. On such occasions I would be taken to the local GP’s surgery where the usual diagnosis would be either growing pains or “it’s just an excuse to get out of school”. Even telling the doctor that other members of the family also had these pain attacks and that my Mother had had them at a young age, didn’t seem to change the diagnosis. I would be sent home with the words “take some aspirin”. Aspirin however, never relieved the intense pain.

In my late teens I noticed dark red spots appearing on my lower abdomen. This seemed to me to be normal as they were few in number and my brothers had them as well. My left ankle swelled during the day in the summer months but returned to normal overnight. I always seemed to be very uncomfortable outside in the sun with burning of my hands and feet and the hotter they became the worse were the symptoms.

As time went by the pain attacks became less and less. The burning sensation was still there all the time but the intense pain only happened two or three times a year. I would have episodes of flu like symptoms that would suddenly come on, last a few hours and then go away as quickly as they started. During these episodes I would just sit or lie down, wrap myself in a blanket and feel pretty miserable, not really able to do much else. I would take a paracetamol knowing it probably wouldn’t help much and just wait for it to pass.

At the age of 37 I had a bout of cellulitis in my swollen left leg and was hospitalised for a week having intravenous antibiotics. I was diagnosed as having lymphoedema in the leg but a urine test was taken just to make sure that it wasn’t a kidney problem. The test showed a high level of protein leakage and so other kidney tests were carried out. It was found that my kidneys were working at a reduced rate and that cysts were present. It was decided that the situation would be monitored over the next year to see if it got any worse.

About eight months after this, a routine GP’s appointment showed that my blood pressure was slightly raised; again this was to be monitored. Around this time an elder brother who had been having bouts of vomiting almost every day after eating, (something that was put down to gall bladder trouble, he’d had stones removed a few years earlier) started to show signs of vagueness and disorientation. Blood tests showed that he was in end stage renal failure. In hospital, tests were carried out but no obvious reason for his kidney failure could be found. A kidney biopsy was taken, but before the results came back an alert doctor noticed a red skin rash on his back. A dermatologist thought it could be due to Fabry disease and the kidney biopsy later confirmed this.

It was then that I turned to the internet to find out about this mystery illness and in the year 2000 there was not a lot of information to be found. I managed to find out that the average life expectancy for a person with Fabry was about 42 and that there was no cure. I also found some symptoms of the disease, pain in the hands and feet, kidney damage and dark red spots. All the things I had.

A few more searches brought me to a message board in the States called FSIG. People were writing about their symptoms and about a new enzyme that was being trialled, that they hoped would reverse the kidney damage and prolong life. I wrote about my brother’s problem to see if anyone knew how I could get help for him and fortunately left my e-mail address. The next day to my surprise an e-mail arrived from a Dr Brown who was helping with a clinical trial of an enzyme called Replagal at the Royal Free Hospital in London. He said he would try to get us on the trial.

I went back to my GP and told her about Fabry disease and my symptoms and about my brother but she hadn’t heard of it and was more interested in controlling my slightly raised blood pressure than finding out about it. My brother in the meantime was started on kidney dialysis which didn’t agree with him at all and it was decided that it should be stopped and he should be allowed to die. He did a month later.

I went back to my GP for another blood pressure check and took with me some information that I had found on the internet about Fabry disease. When I mentioned my brother’s death a few days before, I was taken seriously and she immediately phoned the local hospital to see if the consultant who was seeing me for my kidney problems could see me, which he did the next day. He really didn’t have much of an idea as to what to look for and I had to point out my red rash. His words at that time were “there’s not much we can do for you so I’d go away and make the most of your life.

In March 2001 Dr Brown e-mailed to say that Dr Mehta was taking over looking after Fabry patients at the Royal Free and he would like to see me. He asked if he could write to my GP requesting a referral. This I readily agreed to and in early April I arrived at the Royal Free to meet a handful of consultants all interested in Fabry disease. A few weeks later I spent four days there having tests, including an eye exam, kidney scans, kidney biopsy, bone marrow biopsy and skin biopsy. I even went down to St George’s hospital for heart scans.

Dr Mehta persuaded the makers of Replagal to allow me to have it on compassionate grounds and on the 13th June 2001 I had my very first infusion. Now with the help of my wife I have infusions at home every week and it has become a part of my life. I go back to the Royal Free every six months for tests and it seems at the moment (January 2013) my condition is stable.