My Disability | EEC Syndrome / Ectodermal Dysplasia
ฝัง
- เผยแพร่เมื่อ 4 ก.ย. 2024
- Explaining what it's like having EEC Syndrome - ectrodactyly, alopecia, sight loss etc.
Click 'show more' for links! xx
--
If you like my videos and podcasts, please consider supporting me on Patreon: / jenvcampbell
--
MY BOOKS:
THE GIRL AQUARIUM: tinyurl.com/yc...
THE BEGINNING OF THE WORLD IN THE MIDDLE OF THE NIGHT tinyurl.com/ln...
FRANKLIN’S FLYING BOOKSHOP: tinyurl.com/hl...
FRANKLIN AND LUNA GO TO THE MOON tinyurl.com/yb...
FRANKLIN AND LUNA AND THE BOOK OF FAIRY TALES: tinyurl.com/y2...
THE BOOKSHOP BOOK: tinyurl.com/qb...
--
Things mentioned:
Playlist of videos on disfigurement and disability: • VIDEOS ABOUT DISFIGURE...
NFED: www.nfed.org/
UK Society for Ectodermal Dysplasias: www.edsociety.... (I forgot to mention this in the video!)
International groups: edsociety.co.u...
Nora's video: • "Me & EEC"
----
WHO I AM
Hello, my name's Jen. I'm an award-winning poet and short story writer. My debut short story collection 'The Beginning of the World in the Middle of the Night' is published by Two Roads, and my children's books 'Franklin's Flying Bookshop,’ ‘Franklin and Luna Go To The Moon’ and ‘Franklin and Luna and the Book of Fairy Tales’ are published by Thames and Hudson. I'm also the author of the Sunday Times bestselling 'Weird Things Customers Say in Bookshops' series, 'The Bookshop Book,' 'The Hungry Ghost Festival’ and ‘The Girl Aquarium.’ I run writing workshops, give talks at universities & book festivals on a variety of topics, judge literary prizes, and take on freelance writing and editing. If you would like to speak with me about the possibility of working together, please get in touch via email: jenvcampbell@gmail.com x
-
Where to find me:
Website: www.jen-campbel...
Editorial services: www.jen-campbel...
Writing Workshops: www.jen-campbel...
Twitter: / jenvcampbell
Instagram: / jenvcampbell
Patreon: / jenvcampbell
Events: www.jen-campbel...
Podcast: www.jen-campbel...
Facebook: tinyurl.com/3o3...
Goodreads: tinyurl.com/hs8...
Email: jenvcampbell@gmail.com
(Since starting TH-cam, some of you have been asking what's wrong with my hands. This video should answer any questions :) • Why I Read and Write |... )
This video contains no sponsored content. Books marked with * were sent to me by publishers for an honest review.
Once I became aware of disability/disfigurement and representation in the media, I started to think way more critically about these issues. It's truly eye-opening and I have you to thank for that!
Thank you so much for filming this video :) I feel a lot more educated as a result
You're welcome! Thanks for watching. x
This video is quite fortuitous for me. I was diagnosed with Ectodermal Dysplasia in 1977 and have recently had genetic testing again. I have had the unfortunate experience of having doctors and dentists blame me for the symptoms that I experience. These include missing teeth, zero enamel on my teeth, limited stem cells on my corneas, no tear ducts, mucus issues, alopecia, very dry skin, reproductive issues, and more. How I was able to do all of that I beyond me. I am here if you need to talk about the prognosis you are facing. In the US we have less info and understanding because we don't have a central health care system. I looked just like you and Nora. It is funny that my eyes looked the same as your eyes, and no thought to treat my eyes. Thank you, it is somehow comforting to see someone that experiences what I am experiencing. I am blind in my right eye and have a lot of anxiety about my independence. Lots of love, and would love to know Nora as well! THANK YOU!!!❤️❤️❤️❤️✌️✌️💪💪
Sarah, if you're not a member of NFED, do join/contact them - link in the description box. They are based in the States and can help with your healthcare/put you in contact with specialists if you need them. Thank you for sharing! x
@@jenvcampbell I'm here if you need to talk about your eyes...i get it.❤️
A couple of years ago I commented on Leena norms video where she interviewed you about the disability. I wrote how I didn't notice any disfigurement until you showed it by raising your hands and you replied by saying that you didn't like my comment. I'm sorry if I offended you. My disability is autism and I have a hard time focusing on both visuals and listening at the same time so I was trying to concentrate on what was being said and not in what the visuals were. Stay safe. 😷❤️
Hi Claire, no problem at all, thanks for your comment. :) And just to explain further, for anyone else reading this exchange who was unsure what I meant in the video: in other contexts, nondisabled people tend to say 'I don't see your disability' a lot (in a similar way to people saying 'I don't see colour' and thinking that is an anti-racist thing to say, when of course it isn't). Sometimes it may be true that the person hasn't noticed/they're surprised/they just met me, but more often than not the person is pretending they haven't noticed or are pretending it isn't something that they're uncomfortable with, because by saying they "don't see it/didn't notice", it shuts down a conversation about disability. It also separates me from my disability, instead of seeing it as part of me. A lot of the time nondisabled people misunderstand, thinking that my goal must be to 'pass' for a 'normal' person, so if they tell me they didn't notice, they think I'll be pleased/take it as a compliment, whereas generally it just highlights their dislike for it, and that is exhausting. xx
@@jenvcampbell I understand completely. I dislike it when people say "I don't look autistic". I'm glad you understand where I was coming from though. I would never want to make anyone feel uncomfortable. X
I thought I'd unlocked all the levels - oh boy, never have I related to something so badly! I am still unlocking levels. Never-ending levels. And fighting to unlock levels is such an added layer of trauma and stress. I waited to watch this video when I could really give it the mental attention it deserves and I'm so glad I have. Thank you for putting yourself out there and making me feel less alone in this body xx
First off I want to say you are my VERY FAVORITE book reviewer! You've changed my reading life and I watch every single one of your videos as well as read so many of the books you've recommended. Your disability video was wonderful. I too am disabled. I have metastatic breast cancer so no cure. It has wrecked havoc on all my bones and I endure rough cancer treatment every month for the rest of my life. I truly understand mourning the future situation with your disability. I've had to come to terms with it, as I'm sure you understand as well. It is a horrible lot we were given but it has made every day more special than before the last 5 years with this cancer. I will continue to be one of your BIGGEST fans. Big hugs!
Until the recent controversy surrounding The Witches remake, it didn’t occur to me that depicting a character with different physical features could be perceived as offensive. If something good was to come out of the movie, hopefully it was to bring awareness to the problem of associating physical differences with “bad guys” for lack of a better word.
I'm working on a research project where I'm trying to bring disability studies into my main field (translation studies) and I found your videos extremely helpful in bringing a very human dimension to what is frequently lost in academic jargon. Thank you so much for sharing these alongside your bookish videos!
My friend just diagnosed with this. Fascinating disability.
Hearing you talk specifically about your eyes and that in-between state moved something in me, while at the same time being strangely comforting... I started having some problems with my eyes last year and I, despite having them checked, don’t yet know what it is; whether it will progress or just stay as it is; and so I’m constantly thinking about it and fearing what might come, as I (too) feel that books are, in many ways, my life. Anyway! Thank you, Jen! x
I have ECC and I learned a lot about my condition through your video. I never realized that my missing teeth and ear that is flipped inside out from the top were related to it. Now I’m beginning to think if perhaps my sinus infections I get that last longer than most are connected to it as well. What I struggle the most is the constant reminder that I am different from others by coming to terms with the body dysphoria I suffer from. It’s difficult to eat in public settings and seeing people’s face change when they see my hands. However, I must say that my mental state is strong and like you are in love with literature and writing. I have a collection of poems discussing my condition and am thankful that by being different I can read people easily and have kind disposition that is keen on being empathetic. Love, kindness, and compassion guide me throughout my life. I used to hide my hands and it’s rare when someone asks about them. Today someone did and I was reminded all too well on how and why I am the way I am. Thank you for this video.
What an incredible video, it was so informative and helpful, you spoke so eloquently and with such pragmatism, which in itself was very ‘comforting’.
As a lover of books, I look forward to watching and hearing all about out your reads and recommendations and hope you stay safe and healthy ☺️
Thank you, Karen x
Thank you so much, this was an incredibly informative video. I had watched your older video when I first found your channel. You've helped me learn a lot more about disability and disfigurement and think about it differently. I'm so grateful that you speak about it so openly.
(Some of the little things you mention have helped me with everyday life with chronic joint problems, so thank you for that, too!)
By talking about your disability it has helped me become better at understanding my disabled daughter and the emotional and daily challengers she faces.I am her carer and honestly it is hard to sometimes understand what she needs from me and to understand her frustration.Like you she is perhaps looking towards more painful and disrupting treatment in the near future as an operation she had a couple of years ago has not been as successful as we expected.So once again thank you so much for being so open about your experiences.I wish you all the best the going forward as I think you are a remarkable person.
Thank you for including some of the common responses people have that don’t offer support in the way they likely intend to. Also, I love how these complex medical terms roll off your tongue with such ease.
'living in an in-between space.' damn. thank you for sharing and educating.
*fellow disabled person here* Thank you so much for taking the time to make this video. Even though we don't have the same condition(s), I too have a condition that affects many different parts of my body and for the longest time doctors didn't connect the dots. Like you said, it's really comforting to see yourself represented, and I related to several things you said.
"Living in the in-between space, grieving something that
hasn’t happened yet but is very likely to happen"
This part of the video really spoke to me. I have an autoimmune condition that is likely to get worse, but since it's very unpredictable it may not happen. I perpetually feel like I am living on borrowed time.
Your thoughts on dealing with this were very helpful and it's very comforting to hear someone else mirroring what you feel. I hope with all my heart that things do not deteriorate for you (and for me). xxx
Thank you for sharing this, and sending all best wishes to you. xx
Thank you for this video. My mom passed away from Parkinson’s 2 years ago. She had it since she was 37, I wish I had been more informed.
I have a chronic, obvious disability . I think its great you're able to teach others about your situation.
In my own case I have the mantras , "it is what it is ,and it could always be worse".
I totally get the feeling you had as a child that one day you’d be ‘done’ and set free. I found it really hard when it hit me that there would be no end and that my body and condition would evolve over time.
I was so shocked and angry and underwent therapy to help me process stuff.
I have Cerebral palsy which isn’t degenerative but things definitely get more complicated as we age.
Thank you for sharing your story x
Therapy has definitely helped me, too, in the last year or so. Thank you for sharing, Monica x
Thank you for this video Jen, and for sharing your life. I have experienced blindness, my sight did return, but I’m very aware it could go again. It’s made me live differently, and I never take my sight for granted now x
I subscribed to you recently, love your book videos 😊. And with this one I became more educated. Sending you greetings from Ukraine ☀️
This was very educational. You seem a strong individual. As someone with a chronic long-term condition I understand how isolating it can feel. Your honesty and openness are admirable 💕
Thank you for sharing your story! I'm sure it's not an easy thing to talk about at length like this.
Grieving what hasn't happened yet is such a relatable statement and I always wonder what is the best way to deal with it mentally particularly in support of other people.
Whilst my brother is outwardly healthy, he had to have his heart reconstructed as an infant and his doctors told him that soon he will have to have it reconstructed again, but when it's a matter of simply waiting, waiting for an appointment, waiting for him to turn from healthy to unwell, waiting for all these unknown factors to reveal themselves, I wonder what is the most useful way to support him whilst he waits for the inevitable. I don't have answers, and wish I did.
Thank you for your candor, it's incredibly meaningful.
Thanks so much for doing this video, Jen. I'd never heard of the condition you have before, thank you for explaining it in such a clear and erudite way. I wish you all the best in the future. 💛
Thank you so much for making this video, I learned so much! Ever since I was 8 years old I started losing vision quite rapidly, the doctors did not know why, but always told me there was a possibility that I would get to a point where even corrective measures like glasses or contacts would not help me. Right now I am about to turn 20 and last year was the first year that my vision started stabilizing a little. Well, long story short I just wanted to say I completely understand the fear about losing your vision, I feel that fear too and sometimes its overpowering but the way you look at it will help me in those moments now, so thank you.
Thank you so much for sharing this!
I admire you immensely for being so public about something so private. I am a regular viewer of your videos and have learned so much regarding disability (and other things as well of course). You have raised awareness in me for many things and I cannot belive how ignorant I was regarding disabilities and how problematic their displayal in the media often is.
Thank you so much for this and all of your content around disability and rep.
Just got a scary new diagnosis this week and this video gave me a lot of comfort to know there’s so many people experiencing lots of different illnesses and disabilities and are thriving as people too. X
sending lots of love. x
Thank you for this video, Jen. I certainly had never heard of Ectodermal Dysplasia. I have a couple of things that will become much worse, one being MD. You are very inspiring and have helped me to feel more positive. xx
Thank you for sharing, Jen! I feel so privileged to be here to receive all of your knowledge.
Thank you so much for making this video explaining your condition. You are such a lovely person and your videos are so genuine I feel as if I'm really getting to know you as a person. I love that you reveal just enough about books to capture my interest but not so much as to spoil my enjoyment of the book. All my favorite book tubers present books that way.
Don't apologize for finding humor with all you have been through and are growing through. I found you very positive and helpful. We have been given a chance to adopt a child with EEC, which is how I found your video. EEC doesn't seem to affect you cognitively. Can you give me some insight on that, please? Thank you for your honest and informative video.
As far as I'm aware, EEC doesn't affect anyone cognitively.
@@jenvcampbell Thank you.
Hi Jen, thanks for talking about this. Completely understand your plea for people not to 'erase' your disfigurement by preferring not to see it. It's selfish, cruel and a form of gaslighting. When I see your hands I see the beauty of science and medicine and how creative we can be as humans in the face of a difficult and painful challenge. I can't imagine how many days and weeks of pain you must have endured to have your hands.
Jen, I have so much respect and admiration for you. You are beautiful, strong and
such an inspiration. Thank you for sharing.
Hi Jen! I too have EEC syndrome. Thanks so much for sharing this video. I’d love to talk to you further if you have the time.
Hello Melisa, I'm happy to talk by email. My email address is in the video description. x
I think your hands are absolutely beautiful, even though I know they cause you pain. I actually find them quite hypnotic, since they are much more mobile than mine and you are very expressive with them. It is so exciting for me to see someone online that has similar hands to mine, and I am sorry I didn't find your channel sooner!
I was born with multiple congenital deformities, including a radial club hand (my only hand). At a very early age, I had my (fused) index and middle fingers pollicised to form a semi-functional thumb. I have rarely seen someone else with scarred hands and missing digits like me.
Although my experience is quite different to yours, I thank you for speaking openly about your syndrome, and the experiences of spending so much of your childhood in hospitals. I particularly resonated with the "working to a goal" attitude, which I have now experienced as a "not much more can be done for you" at the age of 21.
Thank you for doing this and sharing your journey. I have long felt persons with disabilities and disfigurements are the most under represented minorities. While your body and condition are what they are, your spirit is strong lady!
This was a very informative video. Thank you for sharing. I find you so brave. This video was for yourself but also, as you mentioned, for others looking for more information. I just love that you provided that. I adore you and your channel. You have introduced me to many books. Also, I love watching the things you cook. I'm sure they're delicious 🥰
You're an inspirational person and artist. I remember seeing you at The Poetry Cafe in Covent Garden in 2009. Your writing always made a lasting impression on me. I also have some health problems which are mainly psychosomatic. I send you love, Jen Campbell!
Thank you. For this video and everything else you produce that makes my life better. You opened my eyes to so much. I have a neuroma in my foot called Morty by the way.
Jen, You are awesome. I'm going to a disability hearing for my vision loss and am asking the commissioner
Thank you for filming and speaking on all of this; the liminality of loss particularly is a feeling I also experience with my own conditions, and hearing others reiterating it always makes it feel more ‘real’ (as real as liminality can be, I guess). Also, on a lighter note, glad I’m not the only one who knows the burning that is hitting a neuroma against a hard object! Xx
You have a huge and generous heart. Thank you.
Love the book reviews too of course. Keep up the good work. Mx
This is such an important video! Thank you! Phwoar doctors are so clever.
(Side note! This was so aesthetically pleasing with the scarves and the books and the plant etc. 😍😍)
Oh, Jen, my heart broke for you at least a dozen times while listening to this. I'm here for the bookish talk, but it's enlightening to hear about your struggles too. Thank you so much for sharing this information. I learned so much. Lots of love from Vancouver, Canada.
Thanks also Jen
Jen! I've been subscribed for some time. I am so so grateful to you for making this video. It is such an important lesson- that disabled people face exhausting and emotionally taxing daily challenges that we with no disabilities ignore/forget all too easily. I am so determined to combat this lack of understanding in my daily life as a manager to people with disabilites. I really feel inspired to go and bump more own voices writing to the top of my tbr and educate myself better! You've had a grim time, and I'm so sorry. I can't imagine how you must have felt for the past year and what a relief your recent jab must be.
This was so informative!! Thank you for being so open and honest. I love your booktube content and just think you are so funny and thoughtful, you made me laugh several times in this! ❤
Thank you Jen, that was an interesting and informative vlog. I really enjoy your vlogs which challenge me to read outside my comfort zone.
Thank you for sharing your story and experiences with us.
Be proud of your self,. You are beautiful🤗❤️
Thanks for sharing and continuing to educate people about disfigurement and disability.
Jen, thank you so much for filming this video. It was very educational and helpful in understanding more about what sort of things people with EEC and other degenerative conditions deal with.
Secondly and slightly OT but I have some hair loss (not slope is but another reason) at the crown of my head. Are you able to say where you got your lovely green hat? I would love a hat like this for work (when I get to go back to the office after shielding ends) as it’s smarter than my woolly hats I’m currently wearing.
Thank you
No problem, not sure they do that exact one anymore, but you can find similar here: hatshopping.co.uk/Seeberger.html#query=seeberger-news x
@@jenvcampbell ooh will have a rummage
@@Autumn1988 Happy shopping! x
Gracias por tu video y por tus libros. No sabia que esta condición existía. Gracias por permitirme aprenderlo a través de esta conversación 💚💛
Awesome, thanks so much for sharing! ♥️ Omg the puppets you used to make as a kid, so cute! 😍
Thank you for sharing, you are a truly beautiful lady and I am honoured to be able to watch such an honest and intimate video. Xxx
Thank you so much, Jen! It was a great Video and very easy to understand even for people who don't know much about how bodies work. Take care x
Hello Jen. Thank you for making this video and for helping me understand what you and what someone living with your condition might experience. I have learnt a lot and it has made me think much more carefully about how different people's every day life experiences can be ❤️
Your video was both very interesting/informative and moving. All I can say I guess is that I hope you have a good medical team at this time in your life, and that they do a decent job of being coordinated with one another (I say this specifically because I know first-hand this can be an annoying issue). 🙂
Thank you for creating this video.
Great video Jen. Thank you for making it. I understand a lot more now. Look after yourself and have a socially distanced hug. Much love ❤️
Thank you for sharing and educating us more on your condition. I know it has to be difficult and I hope this comment finds you well! You're such a well-spoken advocate and incredibly charming! If you write as well as you speak, I'm sure your books are amazing! Where can we purchase them in the US?
Hello, thank you for your kind comment. You can find them in bookshops and online. Links are in the description box of all my videos x
Thanks for making this video food for thought on many levels. Stay safe💚
Thank so much for filming this. It was really interesting and I learned a lot.
I've subscribed years ago bc of that older video 💛
wow i found someone else with my same issues Ectodermal Dysplasia is a pain to explain to others
Thank you for sharing in this video, I watched your first video years ago but it is wonderful to find out more and to see your progress and to learn more.
This is such a wonderful video. My sister has a different genetic condition that involves degenerative vision loss and I found your explanation ‘the in between time’ so apt. Thank you for making this 🖤
Thank you so much for this incredibly informational video. Sending so much love your way xx
I loved this video! I learned alot ! I felt you went through so many issues with such calm and clarity . I know it's not easy to talk about such things and I would love if you could make a video about some of the things that has helped you with anxiety , and being overwhelmed with your life. What are some things that have helped you through the pandemic as well .
Thank you for all the wonderful educational content you put out. It's much appreciated!
Thank you so much for sharing. It was very insightful and I'm sure very helpful for a lot of people.
Thank you for making this video, this will help me in my work. So informative.
Preciate for your share,and wish you enjoy your life now.
This video is amazing & such a brilliant resource. Thanks for taking the time to make it Jen. x
Thank you so much for doing this video! Sending lots of love :)
Thanks for such an informative video. Sending love.
This was great Jen - thankyou. X
We have the same name
You are Amazing and THANK YOU ❤️🤗❤️❤️🙏 It was highly educational. 💕🤗🤗
Thank you so much for sharing your insights and experiences.
Thank you for this Jen very informative.
Thank you Jen, this video is brilliant and you are brilliant x
Thanks for the video, Jen ❤️
Thank you, Jen. 🇨🇦❤️
Hearing you talk about your time in the hospital and your many surgeries growing up my first thought was Holy crap were your parents millionaires?? But then I remember I'm American and other countries don't bankrupt their citizens from just one surgery let alone several.
Thanks, Jen. ♡
Thank you for sharing this
you are lovely
Thank you. I learned a lot.
Hi
Thank you for explaining your EEC. I did notice your hands but knew you would talk about it when the time is right for you. Are you having to Shield during the Pandemic ?
Yes, I’ve been shielding for nearly a year now. Had my first vaccine a couple of weeks ago, though, so hopefully in a few months things will be a bit better x
Thank you for sharing your story. My mother's side of the family including my mother and sister have EEC syndrome. If you would like for me to give you the information we have or you have send me your email.
This is awful and I’m so sorry you are going through all this. It really makes me angry that we’re still using nuclear power, probably more so, and people want to increase it even these days, if this is the consequence, and Chernobyl is not even the only melt down, it’s just the most famous one. I know they can’t be sure in your case, but if we’re putting in nuclear energy to cut down on carbon dioxide then at what cost because we’re still seriously damaging the environment, just all at once at something goes wrong.
🎶"EEC Syndrome affects the skin, the hair, the eys, the ears, the mouth, the hands, the kidneys ... also head, shoulders, knees and toes."🎶😂 You should write a song for kids. When you eventually go back to schools you can sing it with the kids. They will for sure remember better what EEC is. 😊💖
Thank you for sharing, Jen, you explain everything so eloquently. I was interested in the tear duct operation, trying to work out how doctors would make tear ducts for you. As in, where do they come from, are they natural or synthetic? Sorry if that's a random question.
They describe the procedure in this article bjo.bmj.com/content/bjophthalmol/73/4/261.full.pdf x
Thank you :)
If I went to a doctor and they uses wikipedia for information I would be very concerned 😨
Well, quite!