You know how it is. If you’re lucky you’re actually seeing a specialist dermatologist but most of you are probably going backwards and forwards to your GP, desperate to find answers, always leaving with more questions than you arrived with. Steroids and emollients and the suggestion to stop scratching being the extent to the pearls of wisdom you’ll receive.
I know I always have so many questions and I often don’t get them all asked or don’t get answers I’m completely happy with. I often feel I’ve been whizzed through and out the revolving doors before I’ve even caught my breath. I am not knocking my current specialist. My eczema is so much better since I’ve been under his care, I have learnt loads and am managing my condition much better, but I’ve had to wait until I was in my forties to get a referral to a specialist dermatologist.
And the problem with the NHS is that my dermatologist and all other allergy or skin specialists are always crazy busy. When I visit the Chiltern Hospital in Oxford, the allergy clinics run back to back. There are always delays, sometimes hour long delays and I have to travel a 45 minute car ride to the next county because there is noone for me to see in Bucks. I have to pay to park there too, which mounts up when there are the inevitable delays. Sometimes I feel like he’s not listening but I guess sometimes he must feel he is being stretched and has other patients waiting to see him. I don’t know how he copes. He doesn’t have eczema so he doesn’t really quite ‘get it’ and I see that glazed eye look, “What is she going on about now?” You know the one? I see if often but I understand why that is. I am just grateful to have someone who is willing to spare me the time to see me.
There is that huge gap between the snatched consultation and the rest of your life; living with eczema can be exhausting, depressing, painful and down right unfair.
If any of this sounds familiar you might be interested in this new book, written by Marcie Mom who some of may know from Twitter and blogging. She writes her EczemaBlues.com about life with an eczema toddler.
How is MarcieMom and why did she write Living with Eczema?
In 2009, MarcieMom’s daughter was diagnosed with eczema at 2-week old. Struggling with taking care of a baby who scratches 24/7, MarcieMom knows how hard it is to take care of a child with eczema. At around 7-month’s old, Marcie’s eczema was under control after consultation with Professor Hugo van Bever. Ever since the improved eczema, MarcieMom has passionately devoted her energy to helping families with eczema children, including setting up EczemaBlues.com, support groups and illustrating a children book ‘A to Z Animals are not Scratching!‘ to encourage young children not to scratch.
Professor Hugo is the doctor who first encouraged MarcieMom to reach out to other parents, as many are going through the same struggle. In 2013, he invited her to co-author an eczema book and together their book collaboration flourished. From the book title, the selection of chapters and the content, this book is written by two authors who intimately know life with eczema and devote energy to helping eczema families. Knowing how many questions parents have about eczema, every chapter has a section where Marcie poses a question and Professor Huge responds.
MarcieMom asks, Professor Hugo answers
Living with Eczema is a close to 200 pages of practical advice, explaining the condition and the treatment. People looking for a miracle cure will not find it in this book though, on the other hand, if you are looking for practical ways to control eczema and understand the condition, this book is for you.
What do I think about Living with Eczema?
I just love the idea of this book. It’s not just a book with explains what eczema is and how to treat it, although it has all that too. It is an insight into a patient/doctor relationship, one where the specialist has the time and the knowledge to answer EVERY question.
You can dip and out of this book and read different chapters depending on what’s eating you up that week. It’s stuffed with information about the latest thinking and scientific research and if you have a young kid with eczema you should definitely read it.
The best bit is that it has a whole chapter on food allergies and intolerances. In my experience this the last thing GPs consider when they see a baby or child with eczema. They just say, “Oh look your kid has eczema, here’s some cream…” and this makes me so angry. The first thing doctors should know to check for is food allergies. It is a well known documented fact that most children and adults who have eczema find that it’s triggered by a delayed allergic reaction or food intolerance. If I didn’t avoid dairy, celery and tomato I would have permanent eczema. NO amount of moisturising and good habits will help if your allergen is continually bursting out of your skin like molten lava.
So read this book. It’s fun and quirky and will answer (hopefully) all those questions that keep you and your eczema child up at night, itching and scratching for the answers.
To find out more visit: eczemaqna.com/.
If you look really carefully you might spot a picture of me with eczema – oh the fame!