My name is Janelle and I’m 67 years old. I was diagnosed at the age of six with Juvenile Dermatomyositis. This is a rare autoimmune condition affecting my skin and muscles. I also suffered with blue hands, cold feet and chilblains. In those days, with no central heating or double glazing, this was very unpleasant! While I had difficulty with my mobility, I proudly managed to learn to ride a bike.
Over the years, with frequent trips to Great Ormond Street Hospital and being treated with a steroid medication, I improved and was discharged age 16 from the children’s hospital.
However, my skin, especially my face and hands, which had the telangiectasia rash, caused many issues.
People called me names such as “spotty dog”. It was extremely hurtful and caused me to stay home from school for a time. Fortunately, I’ve always had a love of reading books, and this kept me occupied.
Janelle’s telangiectasia rash caused her to receive unkind comments.
When I was 16, I decided that I had to carry on despite this illness. I started to use skin camouflage products after having seen staff at the Red Cross. This boosted my confidence so much. I was out at discos and enjoying being out with friends for the first time.
I met my husband Steve at the age of 17 and we married age 22, going on to have two children. I also had a successful career in audiology for 50 years. I’m now retired and have four lovely grandchildren.
I use my skin camouflage products daily and will not go anywhere without them. Even to this day, the name calling I experienced and the impact this had on my confidence still affect me.
I’ve tried to be very positive about my condition and continue to live well, going on holidays and taking up line dancing as a hobby. My amazing family are a huge support. I’ve been very fortunate despite this rare disease. The skin camouflage makeup products have been my salvation, allowing me to get the most out of life!
To everyone who is struggling with their visible difference, the advice that I would give is to keep strong and make sure that you have plenty of love and support from friends and family around you. Your visible difference doesn’t have to define the rest of your life. Continue to do what you love.
I hope that the general public becomes more accepting of people with visible differences and learn not to be so cruel with their remarks, as I don’t think they realise the impact it has. Decades later, the nasty words said to me remain in my mind. Let’s make sure that isn’t the case for others.
