Wigs

In previous blogs I have briefly mentioned wigs but have never spoken about them in detail. I thought it would be good to include a blog on wigs because it is a topic that may help a wider range of people as you don’t just have to have alopecia to wear a wig. This is also a topic that I feel quite strongly about.

Now, most of you probably think that having a wig is pretty simple. Well, no. Simple concept, yes but not simple. You see, different wigs need different care and different brands suit different people. It’s a bit like buying shoes. I’m not going to pretend that I’m an expert on wigs because I’m not but after having worn them for over 10 years I have learnt a few things.

Some wigs will need to be brushed or washed on a very frequent basis. Some need to be kept at a certain temperature or in certain conditions etc and all of them need to be kept in some sort of bag or box. This is because, unlike hair, wigs go tatty and look like … will, a floor-mop (something that I have learnt from experience)!:

November 2006 I AM REALLY NOT KIDDING!!!!  A FLOOR-MOP!!!!

Something else that I have learnt from my many, many wigs is that some brands and/or shops sell better wigs than others. Unsurprisingly, the shops that the NHS send you to are pretty much floor-mops when you buy them but you can’t really complain when they are free! However, there are some places out there (admittedly they are hard to find but they are out there) that do have very good quality (and unfortunately extremely costly) wigs for sale. The best place I have ever been is http://www.andreashairoom.co.uk/. Andrea is a lovely women who cares deeply about her job. She only stocks the best and really works with her clients. I bought a wig from her over 2 years ago that still looks new which is extremely good going for some nylon that is tied to a net. Okay, so wigs are a bit more than that but you get the idea.

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Izzy’s Blog

Another friend blog! This time from my beautiful friend Izzy. Sorry it has taken me so long to upload this and sorry for the short comment but just read on!

Having a best friend without hair. Honestly, it’s no different to having a best friend with hair. I’m Izzy, I’ve known Heather for around 6 years now and she’s amazing! Throughout that time, I’ve been the best friend and ‘bodyguard’. It’s very occasional for someone to stare or even comment on the fact that Heather wears a hat or a headscarf, but when they do, I’m straight by her side. Despite having Alopecia or ED, which ever you want to call it, Heather is definitely the most confident person I know. She doesn’t care what anyone thinks about her, she is her own person and I really admire that. She can easily take care of herself, but I can’t help but help her, even if she tells me not to! From my experience with Heather, Alopecia or any other form of hair loss, does not control your life. Personally, I am not diagnosed with anything that changes my appearance. But being friends with someone who does, has really opened my eyes. I’ve learnt that you can’t judge on what you see or use stereotypes to manipulate your opinions. Also, by knowing Heather, I’ve become more confident about myself, because I keep thinking that if she can, I can.

2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 900 times in 2014. If it were a cable car, it would take about 15 trips to carry that many people.

Click here to see the complete report.

Have a very merry Christmas!

It’s only a short on this week but seen as it as only three days away from Christmas, I wanted to do another Christmassy themed blog. However, I think that my last blog was a bit too negative so this week I want to talk about something positive.

There are many positive things about having alopecia at Christmas but one of the best must be when it rains. Yes, when it rains. Just think how many times you gave complained about how you’re hair has been drenched or how the rain has ruined your new hair-do. Well, that has never happened to me. When it is pouring it down with rain, I am usually stood there with a cotton headscarf on. Okay, so it still gets a bit damp but can be easily dried and still looks exactly the same as it did when I put it on.

So, sorry that it has only been a short one this week but I promise to put a longer one up next week.

Oh, and before I finish, I just want to say that I hope you all have a very merry Christmas.

IT’S NEARLY CHRISTMAS!!!!

The John Lewis advert is back, everyone is stuffing chocolate in their faces and tinsel and fairy lights are appearing everywhere. Soooooooooo …….. It must be Christmas !!!!!!!!!!!!!

Winter is my favourite time of year and Christmas is obviously the best time of winter. At this time of year there is nothing I love more than sitting in my fluffy jumper with a bowl of chocolate and stuffing my face with mince pies but every year winter also brings with it its problems!

Every year winter brings with it the fluffy quilts of snow. Great for snowmen and sledging but not so great for cold fingers, toes and the odd bare head. Everyone knows the feeling of being cold during the winter time and having no hair just means that I have more that needs covering up. But my biggest issue is how to cover it up. Here are my options:

1) A woolly hat – Very seasonal, very warm and often very stylish. But what about when you go into a heated room, your head is roasted like the turkey on your plate. Well, that’s easy to solve, isn’t it? Yes, take the hat off, simple. Simple if you’re confident enough to, which I would be know but if it was the 10 year old me you’d have had to prise it off.

2) So the woolly hat might be a no but what about a stylish wig? Well, let’s put it this way, have you ever rapped tinsel around your arms, neck etc. It scratches and irritates the hell out of you! That’s what putting an itchy wig net on my sensitive bare head feels like to me. Not only that but one slight gust of wind and it’s blown right off (“keeping your hair on” in winter isn’t always that easy if that hair isn’t your own) and one slosh of rain or snow and it flattens into wet straw.

3) The third and final option I give myself is a headscarf which doesn’t blow off, dries quickly but also doesn’t make you any warmer in the slightest.

Decisions, decisions, decisions. So next time you are having trouble deciding how to keep warm in winter think of my very cold head and next time the rain or snow gives you a “bad hair day” think of my little head with no hair for wintery protection.

However, having said all that, for me nothing can beet winter and all the joys and problems that it brings with it so please have a good Christmas!

Dad’s blog

Today I decided to upload a blog from my Dad. Now, once again, I’ve had this blog for weeks and failed to post it, yes, like Fern’s, so Dad, I’m sorry. But just before you read this I would like to say I wanted it to be my Dad’s words but I am so aware that his writing skills are, well I’ll just say; rubbish! So, please be considerate to his lack of skills ;).

Nearly 16 years ago, my daughter Heather was born. I know its a cliche but it was one of the best days of my life.

It wasn’t long before we were aware that Heather had a problem with her hair, or I should say the lack of. In her former years we visited numerous consultants and specialists. One day in particular was memorable, Heather along with a number of other Children visited a local hospital, where there were numerous Doctors, each specialising in various conditions. Each child took turns with each specialist in turn, each specialist examining for their particular speciality, it was very surreal, like a grotesque version of musical chairs.

We continued to contact numerous specialists from as far afield as New York. Eventually Heather was diagnosed (if thats the right word) with Ectodermal Dysplasia (ED). ED has numerous symptoms, each child being different, with a various array of symptoms, and degrees. Other than the sparse hair, which is one of the main factors visible, other symptoms are, wide set eyes, deformation of tear ducts, poor nail growth, poor teeth, impaired mental ability. Some Children have all the symptoms others have two or three. Heather had problems with her eyes been slightly wider than the majority of the population, and her ear ducts were malformed, which meant she required operations when she was under two to by pass them.

Before Heather was old enough to be operated on, her eyes produced what I can only describe as “snot” (sorry, I cant think of a better word, but it is very accurate). We had to constantly rub her tear ducts to free the gunk, her eyes were constantly full. There was one incident I can remember like yesterday. We were on a family trip, Julie went to the toilet and I was holding Heather. This woman came over to me and berated me for allowing Heather to be in such a state, and “it” shouldn’t be allowed to be seen by others, she then scuttled off. Oh how I wish I had given her a mouthful but honestly I was mortified and couldn’t think of a response quick enough.

Anyway I digress, Heather had operations to free her tear ducts. Other than not been able to produce tears, she has been fine in this respect ever since.

We had one very stressful day when Heather was about four, waiting on x-rays on her head. There was a real possibility that her cranium would not knit together properly. If this had been the case she would have required emergency cranial surgery. Thankfully she was OK, and it was about this time we realised her mental ability had not been affected – she was insistent on the radiographer show her the x-ray and she wanted to know exactly what she was seeing, even at that age Heather was what can be best described as assertive…okay, bossy.

In the early years Heather wore a wig – oh whilst I’m on my high horse. Please can someone design small children’s wigs so they don’t resemble an oversized floor mop. Anyway she soon realised that she could use her condition to her advantage. Whilst in Disney, she quickly realised if she took her hair off she could get the instant attention of the characters! she spent all day collecting signatures bypassing the queues.

Yes heather has had problems at school, throwing her wig on the school roof been one. But on the whole she has had very few problems at school, she has a superb supportive set of friends. As she has grown and developed I can honestly say, I rarely give her hair any thought, not because I don’t care, far from it. Its just Heather has embraced her problems and turned them not to an advantage, but part of her unique character that makes me so proud.

To finish my ramblings I will leave you with a sentence Heather said to me a couple of years ago, that made me so proud, but with more than a tear in my eyes. “Dad, I’m kind of glad I don’t have much hair, its made me, me”

Why do I have no hair?

I thought I’d do a blog today on the science behind my condition. I have found this one extremely hard to do because of my massive lack of knowledge about what is wrong. This lack of knowledge covers almost everything and it’s not just me who doesn’t know what’s wrong but neither do the specialists. They don’t even know what gene that the condition is on! However, I have used the little knowledge that I do have to do a bit more research on how and why I don’t have hair.

I chose to do this because I’ve always been interested in WHY I’m so different to everyone else and no-one has ever been able to give me answers. I mean, obviously I know that the specialists know more than the internet but right know the internet is the best I have.

During this research I discovered that, contrary to what we have been told, ED is hereditary. This result took me by surprise because we’ve always been told that it’s “a sheer coincidence” that me and my mum have an almost identical hair pattern and that it definitely isn’t genetic (yeah – bullshit! It doesn’t take Einstein to figure out that I’ve inherited, well, whatever I’ve got.) After discovering this I then learnt that it has come from a mutated gene (which basically means a gene that has changed so much that it forms a different type of gene and can happen in one generation). If this is the case for me, it would mean all of my mum’s children had a 50% chance of inheriting the disorder which would explain why my mum, unlike the rest of her family (including her older brother) was born without any hair and without any explanation (and then so was her only child, me). We always thought that this was the case but never knew that ED was caused by a mutated gene hence could actually be the cause.