Thursday, 19 April 2012

DONT forget the grown ups...


Posted by his brother Bryce a little earlier:

We Lost Bruce this morning he went to be with mom.I am sad to let him go but he is no longer suffering and I feel a sence of relief to know that he is no longer in pain.It has been a long 3 weeks that he has been in Nursing Home and was fighting the whole time because that is how he was.I am so proud to be his Brother. Funeral arrangments are pending at Copher-Fesler-May Funeral Home.

In the past 14 years he has fought 33 cancers. In May he had his right arm amputated because of cancer. Aged 46yr heaven gained a warrior!

I am quite sad today to be honest!! I cant stop thinking about the grown ups with Eb.
Those teenagers and adults that are overlooked or seen as "strong enough to cope"...Eb is Eb, no matter who has it, severity or what type........

We must be helping the WHOLE community deal with everday life and struggles. 

So today my blog is dedicated to YOU!!

"Got my first box of supplies from National Rehab! It's like christmas"

There are adults that have never had the correct dressings or creams, simply cos they didnt know what they needed or even what their medical insurance would pay for. There are also those adults who have just gotten worse with age and are unable to do the things they are custom to doing, which for me is very sad.

So many are saying about: 
  • Major throat problems, breathing, swollowing, eating 
  • Huge blisters that have formed at the back of the throat causing HUGE amounts of pain 
  • Having to bandage area's that have never been a problem
  • Unable to walk due to wounds on their feet that won't heal from dealing with their little ones around the house. 
  • Not to mention eye abrasions caused by simply opening an oven when cooking for their families.

These ADULTS still must wake up each morning, run around after families, go to work and more often causing themselves damage just living day to day.

Not to mention the level of stress caused when they chose to start a family...Will my baby have EB?? How will my body/skin cope with pregnancy?? Am i doing the right thing??

Imagine living this fear for 9 whole months........??

Then those parents who have passed their Eb on to their child, Blame & Guilt.
This makes me upset as we are born to reproduce and its our human right to do so. 
Unfortunatly the only way to know you wont pass Eb on to a child is with IVF, but this is only available IF you know the mutation of your own Eb. And most of the time IVF is either too expensive or not available. 

"I admire each and every one of you"

For those living in the UK, yes we have the Benefits system, NHS and Discrimination laws to allow a "Normal" lifestyle but it still goes on behind closed doors. 
Those living in the STATES, they have Welfare but its such a battle to get it and often not enough to cover "Paying" for medical insurance or those things the insurance doesnt cover. 
Employer's have loopholes to get out of giving you a job or even for firing you cos you need to wear "Slippers" at work which i have heard about. Because of these loopholes it makes it hard to place discrimination law's.

Everyday life is a battle, whether its about going to school, college, finding a job or about discrimination from employers or peers. It shouldnt be like this.
School leavers not being encouraged to follow their dreams or even being completely put off from doing certain courses at college cos they believe a job will never become available to them with having Eb.

"My skin is getting worse, but it is stress so I just need to live with it"

Some quotes from adult butterflies :

  • "There are some things I am happy to miss out on, "I can't iron" for example. But other things I have to make the decision that I know I am going to suffer and is it worth it?... Like dancing, one of my most favourite things to do"
  • "Also silly things, like having to ask someone to open a bottle or jar and hating that they will see you as weak, even though the reason is because the skin has sheared on your hands"
  • "Stumbling a lot because you can't get balance on your blisters or new ones are coming up, and people thinking you are clumsy or drunk"
  • "Eating out and crying in restaurants because the chef has changed one ingredient in something that is normally ok but this time, that one change causes blistering and burning"
  • "The way some people look at me when I use my bus pass as they can't see any of the things that are "wrong" with me"
  • "Employment challenges. I'm too healthy for SSI, but not healthy enough to just work any job
  • "Those grown ups were once babies... Lets never forget them!!!"
  • "I know MANY adults who don't have access to the same things the wee ones do also.. or maybe don't know about the advances since we were kids back in the 70s and 80s. Don't just reach out to the new moms and dads. Reach out to us, too"

There are so many things i could talk about but im guessing you dont have a few hours to sit and read it all lol 

Please take the time each day to ask our grown ups if they need any help with anything......


Mollie said...

Sue, I am so proud of you! Your blog is awesome all the time. This was a much needed topic. I hope many read it and share it. Hugs ;)

Sue Altinkeser said...

Thanks Mollie,
Of course the little ones make us more upset cos they are so tiny and vunerable.....But it doesnt get "easier" as they grow up. I also hope people read & share......There is more to be added to this conversation later on :) Hugs xx

ChristieZink said...

Sue...this is certainly a much needed reminder. It is often easy to forget that there are EB suffers who are "lucky" enough to survive childhood. That sounds so ridiculous to can anything about EB be considered "lucky"? I too admire their strength and preserverance, for their battles are many. Aside from daily physical pain, they must also cope with many social and emotional issues. As always, I love and appreciate your insight.

Katie Kacmarsky said...

Your post was beautiful. Being one of those adults, as well as being one of those adults who passed it on to my child, THANK YOU!!! the guilt is one of the worst things, and the posibility of family being upset about your decision to have a baby, can be unbearable. I truly love everyone in my EB family.

Sue Altinkeser said...

Thank you Katie and i did have you, amonst others in my mind when i wrote it. Please feel free to inbox me if you wish something to be added that people NEED to know. Of course im writing from an outsider view but i do listen, read every post and also read between the lines on some peoples posts who dont always like to write what they feel for the world to see. Love & hugs xx

Maria Oliveira said...

Thank you Sue. As Sarah gets older I often think about what life will be for her as an adult, although she will always be my baby! I have been lucky to have met several adults with EB and admire them deeply.

Anonymous said...

Wow Sue! Thanks! To be honest I had never met another person outside my own family with EB. I am the 4th and my children are the 5th known generation with EBS WC. I still have not met anyone, and have been alone with the disease. My siblings, friends, cousins, etc. with EB....until FB. Now, there are so many of us! Wish I had some of these friends growing up. I was always the little girl on a blanket under the shade tree, or the one who didn't know how to play kickball in gym, or the one who couldn't go on field trips. My children have each other and a whole community of EB'ers because of FB. They need not be alone. Thank you for remembering the adults with EB, but especially for being empathetic to a community of EB'ers of all ages and circumstances.

Sue Altinkeser said...

Its not showing me ur name, but i am hoping ur a member of our Eb Lounge? Here is a link just incase:

....copy & paste it to FaceBook. Never feel alone again and im pretty certain that there will be someone close by to you with Eb that you didnt know was there. 880+ members from around the world to support, scream and have empathy with you & your family x

Heidi said...

You are the best<3

craig said...

Thanks Sue, alot of ppl forget about us adults that suffer w/ EB on a daily basis just like kids do. Yes we seem to cope w/ it, but thats only becuse we've learned how to, but it still doesnt cover the aspect that we, just becuse we cope, that we still dont suffer. There are days I can barely roll out of bed, and when I'm capable, I walk so slow and/or slouched over as it hurts to straighten up or stretch to reach for anything. But yet, we as adults must do it. I'm glad you posted that and thank you so much.

sydandjoeysmom said...

thanks sue!!! that was very well said. i had to fight for my social security for a year and a half!! i worry more about the children because they need a fighting chance, but the adults need support too.

Nikki said...

Thankyou so much for this blog! I am 25 and have RDEB. I have gotten worse and worse with age. I use to have a pretty normal life, running and jumping and playing. Now I'm in a wheelchair and have kidney failure. I never got to have the normal things like first bf, first kiss, getting married, having a baby, etc etc.
Thankyou for writing about us adults :)

Nikki said...

Also, being an adult with RDEB is VERY different to being an adult with EBS. You speak of adults with EB going to work/college/uni or doing housework or having a baby. With RDEB you are so debilitated that you can't even move out because u need so much care. Those normal life experiences don't even come into the's more about just staying alive. My friends and I are some of the first with RDEB to have lived past 20.

Sue Altinkeser said...

Nikki thanks for taking the time to read and comment. Yes i know many people with Rdeb and have so much empathy for you all.
If i can add anything to my blog then please just let me know