Hamza Shaikh – My experience with Bullous Pemphigoid, an autoimmune skin disease

My experience all began in early autumn 2020 when I developed a very itchy rash all over both of my arms.

Unfortunately, I was unable to get in touch with my GP face to face due to the coronavirus restrictions. I had to be persistent before my GP finally agreed to see me, in November 2020.

This was the first time I had seen my GP since the coronavirus lockdown, and he confirmed from looking at my arms that it seemed I had a viral eczema infection and so he prescribed antibiotics creams.

Despite the uncomfortable rash, I still had to go to London for a sign language course along with a personal assistant. Before making the trip, I applied the gel and ointment which was smelly and flammable and hurt my arms badly.

On my return from London it seemed the rash had got worse and blisters all of a sudden appeared on my feet. I was panicked and bedridden in my Dad’s bedroom from 27 November. I could not ease the pain from the blisters even when using first aid plasters.

So on the 1st December 2020, I had another face to face appointment with my GP with an interpreter present. The GP recognised the seriousness of my skin which was prone to eczema. He told me to stop taking the ointment, gel moisture and fusidic acid cream and to start to take pink steroids Prednisone 5mg soluble tablets for a week.

A few days later on Friday 4th December, my Father and I went to see a skin dermatologist that my GP had referred me to. This was a horrible experience due to the lack of a sign language interpreter which caused me to feel even more stressed mentally. The dermatologist had a look at my eczema, agreed to prescribe medicines and instructed me to come back in few weeks to see how it goes. My health declined the next day on Saturday 5th December.

Off I went to Birmingham City Hospital in the night-time, instructed by my big sister who encouraged me to go after failing to get through to NHS 111 despite two hours on the telephone queue. I was admitted to ambulance bay 3 through A&E that night, the communication with the nurses was effective as I used pen and paper to write but at the same time, I was in severe pain due to the blisters on my hands, arms, feet and legs.

I had to take a coronavirus test and that came back negative. I was then transferred to the Respiratory Ward the next day in the afternoon. I thought it was the wrong idea to put me there when I was breathing perfectly fine, but I realised the hospital does not have enough bed space to put me in the skin and burns ward so I had to stay there a bit longer until the results arrived.

Eventually, two days later on 7 December with blisters on my feet, I had a stressful meeting with a skin dermatologist who clearly had a lack of Deaf awareness and no sign language interpreter was present. I was called up for a skin biopsy the next day.
In the meantime I was given antibiotics for the skin infections.

A week later, the sign language interpreters came and the histology confirmed it was Bullous Pemphigoid that I was suffering with. I then had lots of medication to keep down the autoimmunity and inflammation.

On 22nd December I started Doxycycline which did not help with the blisters, unfortunately. Because of the steroids since December 2020, I also gained weight. On this day I returned home just before Christmas.

Fast forward to 11th February and I was given Azathioprine and gradually the blisters on my arms, feet, body and face began to reduce quickly. In March I gained my strength back thanks to calcium carbonate and vitamins!

It took various antihistamines to relieve the itching. My sleeping patterns were also messed up for months and I ended up having to sleep on an air mattress bed in the living room.

From March to May 2021, I went to the hospital for weekly blood tests, which was such a nightmare and it was difficult to put the needle in my arms which were already covered in blisters so instead they had to use my fingers for taking blood.

The blood tests came back and said that everything was normal apart from liver function and also showed that I had high cholesterol.

On 29th April after 4 months I finally went back to visit the skin dermatologists who were happy with the progress I had made and confirmed that the blisters will not come back. I am now starting to cut down on the steroids slowly and then finally come off the Azathioprine. I will be returning to see the dermatologists this summer.

Why did I write all of this? I am writing this story to spread the awareness of a skin condition that is very rare in the world internationally and I do not think I have met/heard about others who are Deaf and have suffered with the same condition, who knows?

I also realise how the information about this skin conditions was inaccessible for the Deaf community like me. My mental health has been negatively impacted throughout this experience too – mainly due to a lack of communication at the hospital.

I have since found a wonderful network on social media called PEM Friends which my sisters tracked down for me. My journey with this rare skin condition has thrown in challenges along with some serious reflections about life.

A wonderful college friend of mine decided to draw some special images of me (shown below and in the article header)  – the images represent me and my rare skin condition and the sense of hope is shown by the symbol of sunflowers.

My story about this is to be continued…

 

Hamza Shaikh was born and bred in Birmingham and used to be classroom volunteer. He is currently a freelance language support tutor to Deaf and Hard Of Hearing students in the West Midlands.