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.

Fern’s Blog

Today’s blog is a little bit different because it isn’t from me but from one of my most amazing friends, Fern. I chose to do this because I was really interested (because I’m that nosey) to hear what my nearest and dearest thought about my condition. Now, I must admit I’ve had this blog for ages and just haven’t put I up even after I begged her for about a week to complete it. Sorry Fern!

Hey, it’s Heather’s friend Fern here! I have known Heather for a few years now and she’s one of my best friends, even if she bullies me in maths!
I would honestly say Heather is an inspiration to all alopecia and ED sufferers. She’s gets on with everyday life and does pretty well! We always have a laugh and she is a strong and bubbly girl with many friends. I know Heather doesn’t let anything hold her back. And if someone does you won’t want to be on the wrong side of her!
I don’t think Heather’s lack of hair bothers her that much. Everyone should take inspiration from Heather, even people not suffering from alopecia. She is just such an amazing girl and she will grow up to be an amazing woman!
If you are suffering from alopecia then I would definitely read Heather blogs as they are very helpful, even to me! And also remember, you are beautiful.

What Is It Really Like?

Apology time – I know I haven’t kept up with my blogs for quite a long time but I promise now that I’m going to be a lot more committed to them and am going to aim to put them up at least every fortnight but I’ll see how it goes. Anyway, I’m back now and here’s my 3rd blog:

Earlier on I was reading through my first couple of blogs and read the line “all I want this blog to be is me, telling you what it’s really like” and I realised that I actually haven’t yet. So I thought; that’s what today’s blog is going to be.

Now I’m asking myself: what is it really like?

I’ve never been to the hairdressers,

I’ve never owned a hair-dryer,

I’ve never had a bad hair day

I never had that famous thought: “when I’m big I want to be a hairdresser” but I did want to be a princess: –

 

princess

and I made a wonderful princess, if I do say so myself!,

and trust me the list goes on but let’s save the rest for future blogs (because I have to keep you coming back somehow ;))

but I never cared about any of that. I cared about not being able to have a high ponytale like all of my friends did at the age of ten. I cared about not being ale to brush my fringe back with a hair band because the net would show (but for all the little drama queen’s who are out there now, some bright spark has created a solution to that in the form of a monofilament wig with a natural hair-line!), I cared about not being able to join the conversation about what haircut to have, I cared about having to wear an itchy net on my head all day.

So the next question always is; What did I do?

Well, I cried, I complained and then I got on with it! You know; “Why does it have to be me” but “well, it could be worse”. Everyone’s said it, you all know the feeling! Hence how I learnt I’m not that different, my problems just come in different forms. For example, I remember being on holiday about 5 years ago and I was jealous of this girl who had beautiful hair and their was me in an awful swimming cap – you know the ones! I cried, complained – You know; “Why does it have to be me” etc and then I found out that she was jealous of my gorgeous tanned skin (yes – I’m that one person that tan’s instantly and has never been burnt! Oh, and just to top it off, I don’t have hair on my arms or legs either – never shaved but still as smooth as a baby’s bum, just one of the many perks. Be jealous!) but anyway, she was wondering “why does it have to be her with the pale skin” and then I thought; “Hey, things could be worse”.

Ectodermal Dysplasia

First things first, thank you so much! I have had a wonderful response to my first blog and if you’re reading this one then the first can’t have been that bad (I hope). So, one blog down and here we are again.During my first blog I briefly mentioned that I have ectodermal dysplasia. Complicated? Yeah, I know! Now you understand why I normally just say that I have alopecia! So I thought this blog would be a good opportunity to tell you more about the condition.

Let me just begin by saying that ED isn’t just as black and white as a disorder that causes hair loss. But, in simple terms, ED is a range of syndromes that can lead to many symptoms including:

Hair loss or abnormal hair growth

Tooth loss or tooth abnormalities

Perspiration issues (which can lead to body temperature issues)

Immune system deficiencies

Absence or deformation of fingers/toes

Skin pigmentation

(For a full list of symptoms or more information please visit the ED Society via http://www.ectodermaldysplasia.org/whatised.php)

And for those of you who are wondering, I suffer from hair loss and eyes that are wide set (yes wide set – ie far apart). Yeah, I got away quite lightly, didn’t I? Well, I say lightly, I have had a few, what you might call, problems. But I was never told that I faced problems, I was always taught that I had a new battle to fight and that if I stayed strong then I would overcome it before I knew it. And I don’t say this often but I think my parents were right. Yes, I said it. They where right (but only for that one thing, of course)!