Alopecia | Hair Loss Update

hi everyone I just want to sit down and have a chat evideo with you today I just got back from wick town Book Festival where I was at the weekend and I'm doing an event for Franklin and Luna go to the moon I'm gonna be in Newcastle this week for National Poetry Day I've got podcasts with dinner Smith going up on Thursday a special video going up at the weekend I'll be in Birmingham on Saturday doing an event with Sarah Moss and Megan hunter and I'm doing an event in London on Sunday so I've also got subsequent events after that but I'll leave all details in the description box in case you'd like to come find me on book tour but today I wanted to sit down and talk about alopecia and give you a bit of an update because lots of you who've been asking me to do that as I first made a video I've well I've only made one video about it about 18 months ago and so this is that update video so grab a cup of tea pull up a seat and let's have a chat about hair falling out let's do that cuz why not so last time I spoke to you I spoke to you about how I was feeling about having alopecia which is also what I'm gonna talk about today and how any of my feelings on that subject has changed but the last time I talked to you I said I was pretty sure that my hair falling out was linked to another condition that I had but I hadn't yet been to see a specialist about it and I've since been to see a special about specialist about it and she confirmed that it was to do with the other condition that I have so I have a condition called x10 what exactly dysplasia collecting syndrome I'm sure most of you know that I run a series of videos on this channel about this pigment and so I'll link that down below but it is a cleft in syndrome so I was born with missing fingers it affects my hair my skin it affects my teeth my eyes my kidneys and various other parts of my body it's a very strange very rare very special condition there we go and this alopecia was a new element of it that I didn't know could happen with the condition until it happened to me because it's so rare like it's so rare the doctors don't know the incidence rate of it I set up a Facebook group for people to find each other just you know to check in ask questions and when my hair started falling out I went into that group and I said hey is this happening to anybody else and lots of people said yes this either happened to me when I was young and I've always had it all there were people like me in their 30s whose hair had started falling out so I went to my GP spoke to her she wrote to my geneticist who pulls all together all kinds of data to do with any form of external dysplasia of which ez is one of 150 and then I was also sent to guys Hospital in London to go and see the rare diseases clinic and a specialist dermatologist there so I went along to see her she looked in my head and I will show you in a bit so she looked at it and she was like I am definite 99.9% this is to do with you having EC syndrome I could do a biopsy and take away quite a bit of skin from your scalp and send it away and test it but she didn't think that would really show up anything and given that with that sure that it's to do with my condition there really didn't seem to be any point and so we decided not to do anything and because of the type of alopecia it is there wasn't anything that I could do either you could potentially use steroid cream but she was also pretty sure that that would do nothing either and it's also not a great thing to use extensively so basically there isn't anything that we can do I knew that before going in but you know I wanted to go talk to her anyway if nothing else so that I can be a guinea pig for them because they didn't actually have anyone else would be see there what she had personally never met anyone with you see even in the rare diseases clinic so there we go as I said so with the kind of alopecia that I have it's not the kind where your hair grows back there are lots of different kinds of alopecia and I believe that one of the main ones is where your hair grows back and then pulls out at various different stages it might be because of a different illness that you have it might be because your stress it might be whatever there are lots of different reasons why that might happen but for me I have scarring alopecia which basically means that the skin on my head has decided that it's no longer hair follicles skin cells that it's no longer scalp there's some kind of genetic programming hiccup which makes them thinks too which makes them think today I'm taking a holiday and I'm taking a holiday for the rest of my life and I'm changing I'm changing my job and I'm no longer bit gonna be a scalp piece of tissue I am gonna be what I've always wanted to be which is scar tissue and then it retakes and it becomes that I find it really fascinating actually and it's interesting that it happens in your 30s it's the kind of Miss programming that can cause growth to occur and and things like that it can be quite dangerous but this isn't making me ill or anything like that so you know I'm cool with it it's just kind of annoying so because they've turned into scar tissue cells it means that the skin is now really smooth and thick and hair can't grow through it I also will say at this point that I am NOT a doctor I'm just telling you about all the things the doctors have told me and I've spent lots of times doctors and lots of time in hospitals so this is this is me translating what I have been told so the hair cannot grow through and therefore there's nothing that I can do to make it you know change back to what it was before and to me this seems similar to what happens with my eyes and my eyes of the eyes of other people who have easy because at this stage in your life like late or early thirties but late 30s your corneal cells can also decide they're gonna take a holiday and not be corneal cells anymore and there'll be a different kind of skin cell and it's a it's gonna sell that you cannot see through and it means that you can lose your sight and again I've spoken about this in a different kind of video too so I do find the whole thing really really interesting but as I said today I want to talk about how I'm feeling about having alopecia in general it's weird because for me it's being quite a gradual thing and when something is gradual it can creep up on you and you might no not notice the differences until you're confronted with them in in one kind of way and the other week and we would I was talking about something I can't remember what we were talking about hair and she was saying that a few years ago I used to wear my hair in a different way not that different because my hairstyle doesn't change that much to be honest but I used to wear it in a bun and then it would have I'd have lots of hair coming down over the sides and I'll find some pictures as I'm talking and I'll insert some stuff here and she and she said oh you don't you don't wear it like that anymore you wear it with all your hair up and I said oh it's because I don't have that much hair anymore so I can't wear it like that and she said oh because I guess she never thought of that really and I do still have quite a lot of hair I know for someone whoever who has alopecia I am lucky and I do have still have lots of hair I used to have lots of hair before my hair was so so thick and after I had this conversation with Jeanne I decided to go back through some photos and look at how my hair was so again here are some photos here and as you can see I had so much hair now I wear all of my hair up and I know I have it down right now but that's because I'm in the house whenever I leave the house I have all of my hair up so that it covers all of the bald patches on the back of my head where my hair has fallen out and I will show you that it's gonna be difficult but I'll get a mirror and we'll try we'll try and do some angles and and and yes and we'll do that together and so that is why my hair is like that and it wasn't until I looked at those old photos the other week and saw how much hair I used to have that I realized how much hair had fallen out of my head okay it's very difficult to show you and to angle the camera I think that you can see if you finder is quite far away but I think that you can see so essentially I have quite a few patches like this on my skull my skull on my scalp now where the hair can't grow because the skin cells now think that they are scar tissue so that is what they have become and I especially can't cover up this one on the back of my head as a comb-over unless I put all of my hair up on the back of my head instead the weird thing for me is the the the change between how I feel indoors and how I feel out with my appearance because in the house I can walk around you know with my hair down and when I had set on it's grab stories I was gonna make these videos I asked if anyone had any questions about alopecia one question was how does mr. M feel about it and he's fine with it he doesn't care I think there are there are more pressing things to deal with to do with my health that he cares about more than than my hair falling out I mean I'll see ya I think he would rather that it didn't in the same way that I would rather that it didn't but he's not you know grossed out by it or um you know any of those things I don't think I would be married to him if he was and so he is just you know he doesn't care anyway so in the house I wander around with my hair down and I don't think about it so much unless someone is coming to visit and there's someone in the house in which case I will put my hair up like even if friends around I will put my hair up just because I feel more comfortable um doing that and that's kind of silly I suppose with my friends as well because I should just feel okay with wearing my hair down and I'm sure that they wouldn't care that's something that I just have to address and so in the house if no one else is in and it's just me and mr. make cetera I will just wear my hair down and I don't mind and when I go outside I have to put my see I told you I feel like I have to put my hair up and that's okay during the winter because I can either put it up or I just throw on a wooly hat and I go out of the house but in the summer in the Sun it is difficult in the summer is really difficult because there were times when I really wanted to wear my hair down and I couldn't wear I couldn't find anything to wear that felt comfortable I was thinking of wearing kinda I suppose like 1970s a scarf over here with the flap that goes over the back I am NOT probably describing that very well but almost like a like a hankerchief kind of thing but that wouldn't cover the back of my head and also if it was windy it would just flap up and it would be useless anyway and the straw hat that I had I I didn't find it comfortable at all and head scarves are a possible thing but they in the summer it's not very cooling I found them quite stifling and I think it's because I still have quite a lot of hair I just have these patches where I have no hair so trying to find something that suits the amount of hair that I have is quite tricky and I did buy some wigs to kind of experiment with them in case you know I really wanted to wear my hair down to something but I have not found a wig that suits me and also because I have out what with hair you can flatten it and everything but they're just they are not comfortable I appreciate that they're not comfortable if you don't have any hair either because even with a wig cap there they're very they can be very itchy and if it's very hot outside they're really they can overheat your head so I appreciate that wearing a wig is never going to be like the best option whatever but I think in my head I always thought that wearing wigs was kind of glamorous and you get dressed up and feel really fabulous and maybe you can and maybe I haven't found the right way to do that with but I found that that is not the case or at least so far in my experience it's not the case that it's a glamorous thing to do and I think I kind of resent it because I feel like I have to do it it's not like it's fun dress up and I'm being someone else maybe maybe I resent it because I feel like I'm trying to adhere to some standard of beauty that I really just and part of my brain really just doesn't want to do that I'm annoyed because I would like to just be able to leave my house with my hair as it is and with you know my scalp showing and everything and but I also know that society is very judgmental and I know that from working in a bookshop for ten years and dealing with the public and people being really rude about my appearance and my hands and and I can't be asked with that in my day to day life I can't be asked with the backlash of that and I'm annoyed that I'm not annoyed that I can't be asked because I think self-preservation is good but I think because I don't in theory care about what people think of me it's just I don't want to have to deal with what they have to say to me if they want to say stuff I don't want to deal with the whisperings I don't want to have to deal with like the rudeness if people thought things and didn't react and didn't say things I don't care about that people can do whatever they like I just can't be asked with having to spend energy explaining myself of my appearance to people that I don't know and therefore it's easier to wear my hair up or or you know wear a wig if I could find one that I thought suited me and as I said there is that part of my head that's like why are you trying to please other people oh this is future me adding the things I knew I forget some things people also ask me how my family have reacted to my hair falling out and I think that it upsets them a lot more than it upsets mr. M and not in a way that they think it's bad though I think generation wise how women should look at cetera I think that older members of my family do you think it's a shame in that way in a way that I don't feel but I think you know from my parents point of view etc it makes them sad because how do what do I mean they feel nurturing and they would like to fix it and they can't and I think because I was so ill and because I was in hospitals so much when I was younger and they were the ones who were you know at my bedside who were looking after me who were you know make me see me through all my operations and all that stuff they could actively care for me and now when things go wrong with regard to me having you see because in the past few years quite a few things have happened you know I didn't growth in my liver and my hair started falling out and I developed arthritis and my eyesight so I started to go weird I think I live so far away now and I'm not their little girl anymore but obviously I still have no need to go there any change in even if it's not something that is making me ill is something that upsets them because they can't do anything about it and they would like to be able to do something about it even if that was you know making me dinner and caring for me because when you can actively do things for somebody it makes you feel better and I completely get that and I say that as someone who likes to mother a lot of people so yeah I think that is how how they feel about it also on Instagram people were asking how I felt about hairdressers and weddings and any events that might need or require people to say we want to do your hair excetera how do I the response of that last summer I did a photo shoot with the times because they did a segment on booktube and they needed to take my photo for that and then they said you know can you come in and we'll do hair and makeup and I said that I would do that but that they couldn't put makeup on my eyes because of because as I said the condition affects my eyes and I can't have any mascara or eyeliner or eyeshadow on my eyes I've had comments about that some people say why do you wear makeup and you wear lipstick but you don't want anything on your eyes I can't wear anything on my eyes so I said yes I'll come in and do makeup and you can do that but I can't have stuff in my eyes and also I would rather do my own hair because because I have alopecia and they said that they were absolutely fine about that but I felt really like icky having to put that in the email and self-conscious about saying it I think I would feel less so now because it's been over a year since I had to do that and I've had more occasions where I've had to say that and but I think I feel awkward because I know it makes them feel awkward because they're really nice people and they think you know we don't want to offend etc that's fine so it's just it's awkward for a minute but then it passes and then it's okay there have been some weddings that I've gone to where the option has been to you know have and your hair done and your makeup and I always just say no and and there have been occasions where there have been Hindus that I've been invited to where people are gonna go get and have their hair done and and all of this like that is the Hindu is the getting pampered and I always feel I mean I can't help I feel I feel a bit like a particular Bhima well I really don't want to go do that and you know I mean if it was one of my really really close friends I would go and I would do that but on these occasions has been people who you know it's been nice to be invited but I don't know them that well and because I don't I don't feel I can really cross that barrier with them to go and do that so I have declined but as I said if it was a very close friend I would just go and have fun with everybody else and not have my hair done I don't go to a hairdressers to have my hair cut mr. M cuts my hair I bought some hairdresser scissors and he cuts it and because I don't wear my hair down because I wear up all the time it doesn't matter if it's not that straight but I don't think he does like particularly I mean I'm looking in and out I probably don't look at it too closely it probably is really uneven but also I don't care in general it doesn't bother me too much I think it's just frustrating that there are some elements of society and some things I do in some events I go to and where I have to think about it more than Norb I would like to not have to think about it I would like to be able to just go out and you know have not really done anything with my hair and just good you know go somewhere I'm in a rush I don't wanna have to spend ages and what doesn't take that long but you know longer than normal in front of them they were making sure that all of the bald patches on my head are covered when I put my hair up because it's getting harder and harder to do and there are points sometimes throughout the day when I realized that my hair is you know moved in it some and now I am showing patches and I feel self-conscious about that and I try not to it's just a battle with with part different parts of yourself you know I am as I said I am in myself fine but then there's a part of my brain that's programmed by society telling me to care and sometimes that gets in the way and that's annoying and I'm sure that there were more things that I was going to say in this video but for the life of me I can't really think of any no but if you have any other questions that you would like me to answer then please let me know in the comment section down below and I'll either answer them there we'll make another video at some point and I will say please please please please in the nicest way please don't give me medical advice in the comments section trust that I'm seeing all the right people and uncovered and my condition is really complicated so I please don't save yourself save your energy but I appreciate the the well wished like the well the well wishes the well wishes and the good intentions that it's life's like that you know stems from but but I do not need it and but if you would like to chat in the comment section down below that would be lovely and as I said if you have any other questions let me know and I will try and answer them I hope you guys are having a great week and I'll speak to you very soon [Music]

Channel: Jen Campbell

Views: 9,310

Rating: 4.9789195 out of 5

Keywords: #JenCampbell, #Alopecia

Id: avzXO2RJx8A

Length: 20min 51sec (1251 seconds)

Published: Mon Oct 01 2018