The Worst Symptoms of Ehlers Danlos Syndrome || EDS Awareness Month 2021
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- Опубліковано 4 тра 2021
- it's that time of year again! EDS & HSD awareness month comes around quick! I'm back for my 5th annual series of Ehlers Danlos Syndrome & Hypermobility Spectrum Disorder Awareness Month videos with my dazzle of zebras from across the world. This year we have 27 zebras with 4 different types of EDS and HSD from 8 different countries sharing their experiences of what it's like to live with these rarely understood conditions on a daily basis.
This is the first video in the 2021 series and we are talking about the worst symptoms of HSD, hEDS, cEDS & vEDS. From chronic pain and fatigue to dislocations there are huge lists of symptoms around but I want you to hear from people living with EDS on a daily basis what the worst symptoms they face are.
This video is dedicated in loving memory of Saarah Ahmed who wanted to take part in this series but sadly passed away before she could. Saarah lived with a very rare type of EDS called kyphoscoliotic EDS and she always wanted to raise awareness. Her family want her legacy to live on so please visit the links below to learn more about Saarah & her advocacy work.
/ saarah_ah_
www.newsandstar.co.uk/news/19...
www.thesun.co.uk/news/1467636...
I am fundraising for @TheEhlersDanlosSociety throughout May please head to / chronicallyjenni to donate
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Huge Thanks to Everyone who was involved in this video:
Adriana, North California, USA,18, hEDS, IG: @adrianaedswarrior
Alexis, Alberta, Canada, 20 , hEDS, She/They, IG: @therarewanderer & @ggalexis12 Blog: therarewanderer.travel.blog/
Alyssa Maryland, USA, hEDS, IG: @spoonfullygraceful
Amber, Gloucester, UK, 18, HSD, They/Them, IG: @_prisma_art_
Amy Mckee, Yorkshire, UK, 22, HSD, She/her, IG: @voldycat7 YT: / @voldycat
Ayesha, Brighton, 33, hEDS, She/her, IG: @ayeshashasha777 YT: @AyeshaShaSha
Bradley, Victoria, Australia, 29, vEDS, he/him, IG: @veds_zebra
Caroline, Essex, UK, 35, hEDS, IG: @lilcaz10
Catie, Pennsylvania, USA, 25, hEDS, She/her, IG: @lifeasazebra & @sunflower.catie
Clara, Texas, USA, 21, hEDS, IG: @clara_and_arlo
Eleanor, Scotland, 22, hEDS
Eliza, London, UK, 24, hEDS, They/them, IG: @disabled_eliza
Emma, Kent, UK, 27, hEDS, She/her, IG:@ehoughton24601
Georgia, Cardiff, 22, heds, she/her
Jasper, Newcastle, UK, 26, hEDS, He/him Twitter: @queercanthear
Jeannie Di Bon, London, UK, hEDS IG: @jeannie_di
Jenni, Essex, UK, 25, hEDS, She/her, @chronicallyjenni
Jenny, Hampshire. UK, 32, hEDS, IG: @jennycole1998 YT: @JennyCole1988 Blog: jaffacat.co.uk/
Jill, The Netherlands, 27, hEDS IG: @jillhubersmooren
Kate, Northumberland, UK, 26, hEDS, IG: @katestanforth
Katya, London, UK, 26, hEDS, IG: @positivelychronictravels
Luca, Ferrara, Italy, 35, cEDS, he/him, IG: @tre8bre FB:@tre8bre.1985 YT: @tre8bre
Marisol, Mexico City, Mexico, 28, hEDS, She/her, IG:@solprni
Rachel, Essex, UK, 25, hEDS, IG: @racheleanneblog
Robin , Vancover, Canada, 29, hEDS, IG: @robinhahnsopran YT: / @robinhahnsopran
Simon, Devon, UK, 42, hEDS & cEDS, He/him, IG: @the_bodyboarding_eds_pilot
Special Thanks to my amazing boyfriend Ian for helping with editing!
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Thanks for sharing this! There's a huge lack of awareness for EDS and HSD. I recently got a sarcastic "oh, poor you" from an older colleague who recently hurt her foot when I was having a pain flare up causing problems to climb down the stairs (i have HSD) have told her before about it, but it's as if problems related to connective tissue are ignored or dismissed by others cause they don't understand it.
People really struggle to understand especially when it's something they can't see. Sending loads of spoons & love your way, you're not alone x
Oh man I would fume over that. It's one thing when strangers make those kinds of comments, but your own coworkers making comments like that really hits different. Gross... at least it outs the people who don't understand (and usually don't want to) so you can know who to not pay mind to.
I'm so sorry that happened, its so frustrating when people don't understand the condition or even research it to try and understand. Other people can make you feel like you're a hypochondriac or your crazy. I have learnt to say a few phrases that sum it up using some medical words and tell them to Google it as I'd be here all day explaining it, so that the person who doesn't understand will hopefully then go and look for themselves. Just know there are others out there that do understand and make up for the ignorant ones. Hope you're having a good day today.
I have EDS and when I told my manager at my job my physical restrictions my co workers said I was making up a disease so that I wouldn't have to work so hard. It was so hard to work with those people who mocked my illness as I was in agony.
Can it cause muscle waste?
I lost my brother last year to ellerslie danlos for 3 years he got thinner and thinner he had really bad pain in his stomache he always used heating pads for the pain he also couldn't eat anything without puking it back up by the time the doctors knew what it was he was already dying from organ failure the collegen that connects his tissues fell apart which made his organs dissolve they patched his intestines 3 different times but last time they ripped open the doctor went to open him back up only to see that the staples used to close his surgical wound didnt work his stomach fell open his body refused to heal he had less than 20ft of intestines when he died it also effected his brain for last 2 years he was always in a rage or very sad like it was also earing his brain nobody would help him because of his random mood swings except for me I always tried I had to watch him die suffering he lived 4 days longer than he should have my only positive outcome in all of this is knowing he believed in Jesus and went to heaven his last word was wow as he had the look of amazement on his face I know he was seeing heaven and I know he doesn't have to suffer anymore thank you God for keeping him!
incredible. so many patients ignored and blatantly overlooked. i lost 90 lbs over 11 months going to multiple hospitals and doctors. was made to take a psych eval to prove that i wasn’t not eating on purpose, was told i was trying to get attention, got a test confirming a diagnosis and was told it was unreliable and was placed next to the hospice room to listen to people die over and over for 7 days as punishment because THEY didn’t know how to treat ME. healthcare workers that were there during Covid are suffering from compassion fatigue. until they get their own mental health care every patient that walks into the doors will be experiencing their trauma. the end.
I am truly sorry.
thats life with Ehlers- Danlos
sad
i have EDSV, im 74, ive died 3 times-- i mostly use drs for diagnostics
I just saw this, my daughter is 16, and has hEDS. This made me cry, seeing other people who k own and understand what she's going through. All we have now are many Dr's who treat her symptoms separately. She always in so much pain. Keep going with this channel. Make it big! All need to know.
Fatigue is my worst symptom. Historically, the dysautonomia/POTS had been the most debilitating, and was the first sign of my EDS. However, my EDS specialist has managed to get my dysautonomia/POTS and digestive motility issues under control with Mestinon - an old medication which has become a miracle pill for many EDS patients. Treating POTS and gastroparesis with a single medication is efficient, but not all EDS patients are helped by it since we're all different.
So glad you've managed to find something which works for you in controlling those symptoms! Spoons & love x
"pain on pain"- Thank you for those descriptive words! They are perfect. I've been using "layers of pain", but yours fit even better.
The worst for me is that I am often not believed by doctor collegues. Also fatigue, GI issues and progredient muscle weakness.
I have hEDS, and I get the pain and the fatigue. But my worst symptom on top of those things is the anxiety that coomes from not knowing whether my legs or arms will work properly or randomly sublux when walking, or if I'll walk through a cloud of someone's perfume and have a near instant MCAS reaction. It's not knowing how to prepare for each day, because I might feel incredible, or I might not be able to get out of bed.
I fell like my own body is that friend who you can never rely on to give you a straight answer. I feel like I'm in a constant struggle (or confrontation) with my body, and THAT'S draining much of my energy too. I used to have so much confidence, even despite my body being kinda wonky...but now that I'm menopausal and much older, going out to run errands or even simply trying to be social is such a daunting task.
thank you. it s so nice of you to have integrated some fellow male EDS. It s so rare to see males in this type of videos in general.
Thank you so much for putting this together. I think it's so telling that we're all talking about these awful symptoms like they're nothing, they're our lives every day and just because it's our normal doesn't make it any less awful.
Yes that is such an important point Amy! Thank you so much for being involved!
So, I know it isn't okay to self-diagnose but I was on my own with my health because of a doctor that didn't pay attention to what I said until about a month ago when I found a new doctor. I wanted to see if anyone has chronic bone pain with EDS. I have seen that it is a symptom but I haven't seen anyone talk about bone pain directly. I also have a lot of other things going on but the bone pain is the worst and longest lasting symptom I'm having. Any input is appreciated.
RIP Saarah Thanks given to everyone in this production.
Thank you for including me on this year EDS & HSD Awareness video! I really feel honoured as spreading awareness really means a lot to me!! Can’t thank you enough for putting this video together!! Spoons & Love 🥄🦓💜
So good to have you lovely! Thanks for taking part & sharing! x
I am autistic and deal with spasms and chronic headache. My full genetic profile revealed my EDS risk as very high. So I probably have it mild or mosaic as in only certain areas of my body.
I quit all vegetables, many fruits, grains, and land animal foods and had severe oxalate dumping for about a year and then my fatigue, spasms, and sulfur sensitivity greatly improved.
I am 64 and live in a van outside of a national and state park to cope, near a coast for the seafood.
Magnesium chloride added to my drinking water and legal THC give me enough relief to enjoy an outdoor life. I retired from teaching so now benefit from lots of solitude.
The ubiquitousness of commercial fragrance has totally destroyed my physical connections with humanity. Shame that. Btw I was vaccine damaged by a later recalled batch for small pox which gave me severe dysautonomia since I was 12.
Same! Re: 1st & last paragraphs! ❤
Chinese company recently bought out the chemical fragrance companies supplying additives for products everywhere!
Gain, Tide, Febreeze, cologne, drug store perfumes, All of it is inescapable now and so terribly isolating.😢
Thank you so much for including me in this video, and for using your platform to demonstrate the millions of ways EDS can affect people! Happy Awareness Month to all zebras, diagnosed or not, everywhere around the world 🦓 🦓 🦓 🦓 🦓 🦓
Was so great to have you Robin! You're amazing sense of humor definitely brightened up my editing! Hope we can raise lots of awareness with this series x
@@ChronicallyJenni Silly fun is definitely on-brand for me! 😂I'll be spreading this as far and wide as I can!
I have had health issues since I was a teen. I fell several times on the ice trying to skate. I had major knee surgery at 19. I am now 64. I was diagnosed with fibromyalgia, babesia and lymes. I've been dealing with chronic pain and exhaustion for decades. Problems in my neck due to foraminal stenosis, spurs and herniations. I have had and still have joint problems. I've had shoulder surgery due to spurs and arthritis (I have a deformity in them). A knee replacement too. I had to go on disability in 2011. I worked full time and it was very hard on me. I had no idea cervical prolapse was a symptom. I had surgery at 38 due to that and a bladder prolapse. I also have huge issues with my digestive system. My daughter was diagnosed with EDS. She is the one who told me I have it. As a kid I could put my thumb against my wrist. It ALL makes sense now. How the many doctors I've seen never diagnosed itis beyond me. Thank you for the awareness and sharing stories.
I have eds found out late for me and my mum who had detached retinas prolapses and then severe ms who I just lost I have fybromyalgia CFS ibs Asperger's add huhhad haitus hernia opp
@@tomsale5142 I'm so very sorry for your loss. You're contending with a lot of issues. My heart and prayers go out to you.
No appetite for me and constant GI issues (gastoparesis).
Sorry, I understand. I have tried ginger and CBD to help appetite, for lower GI pain paresis, oil of peppermint or Dicyclomine from attacks, movantik and linzass are helpful for gastroparesis constipation and I would highly recommend using renew cleanse more nightly or Triphala nightly from a good company, I hope this blesses and helps you
Thank you for letting me be part of this year’s videos Jenni. It’s great to be alongside so many amazing zebras raising awareness. I know how much work these videos take (I’m currently in the process of editing my own!) so thank you for all your hard work xx
So great to have you Jenny x It's a challenge but it's worth it to help raise awareness and help people x
Ty for putting this video together. I encourage u to include some of us oldies next time too! So many EDSers think we can’t live this long!!
No problem! I did speak to some older zebras unfortunately they weren't up for taking part this year, unfortunately having the condition can often get in the way. I always put several call outs out in early April every year. Will definitely try and get some more next year x
Ty for responding! May I suggest u contact Ehlers Danlos Support After 40 on Fb?
Ooo I've not heard of that group before I will definitely contact them next year, thank you x
I'm a 46-year-old male with hEDS, so I'm in an underrepresented demographic. I've emailed with you in the past, and will send you another so that you have my contact info.
@@Dulcimeristhow are you now I am 44 with eds
I became aware of EDS when my daughter was diagnosed. Afterwards she asked me about my symptoms as her doctor said it was genetic which led to my eventual diagnosis. One oddity I would like to do without is my jaw dislocating in my sleep every single night. When I wake up it is hard to talk or eat and even after I get it popped back into place it is sore for quite a while.
Thank you so much for this. I'm trying again to go see a doctor about possible hEDS and I figured I should take notes. It's really nice to not just hear that others are going through this but also I needed to be reminded of my symptoms cause I sometimes forget they aren't normal.
Great job Jenny and everybody having a bad pain flare and fatigue but I'm glad to ca other pain Warriors talking thank you
Thank you Lora x
Thanks for putting this together. Helpful to share. It gets tiring explaining the issues we have.
Suchhhhh an honour to be a part of this awareness video to show how EDS can impact us in such a huge range of ways 🤍 🦓 🖤 so much love to all my zebra warriors 💞
Thank you so much for getting involved this year Katya! Great to have you! x
thanks for sharing i don’t feel so alone knowing others have these struggles too a great video
Thank you for this video! I am trying to move houses to a home we just bought and we get to paint and do stuff to it. I'm excited but everything i do causes pain flares. It's so hard. Also my genetic family seems to have symptoms too but nobody is diagnosed yet. I actually had one doctor tell me that I most likely had EDS when I was younger but no longer had it since my joints are so stiff now. Ummm... It doesn't work that way... So my worst symptoms are pain (muscle pain in my torso mostly), subluxations in my hips and ankles, arthritis from injuries, fatigue, and planning recovery time for any activity I do. Hugs to you all that can accept them!! ❤️❤️❤️
ysy. thank you for sharing! I love knowing others who can't eat Garlic.or Onions . That is One thing that people Really Really can't understand. well, they can't truly understand any of them but The garlic & Onions
...I can't even be Near them when raw, being cut, being cooked...I had reactions walking past a restaurant exhaust . it's very frustrating.
- & So unpredictable!
Does anybody else have pain that can be described as "your bones being in a vice". I get crushing pain alot
YES! Thats exactly how I've been describing it like all my joints are in a vice and its being tightened. I have been told I have a chiari malformation too which don't help with neck and back pain.
@@ErinShanahan-cb9fhdid they find Chari in mri
@@tomsale5142 they found it in an x ray actually. Which now that you mention it it wasn't seen in mri but was in the xray. Just heard a doctor for chiari speak on that issue that the Mri or xray for chiari you should be sitting not laying down because that's when it compresses into the spine, not while lying down!
Yes!! A thousand times yes! I always described it as being crushed by a hand made of iron, but iron vice is more succinct.
@@selina360 or sharp like a daggers
Eleanor is correct. The amount of adaptation required to maintain a quality of life is quite a bit. As I get older, the issues get more numerous and burdensome. I have had good care and do my best, but that does not stop its relentless progression. Because it is genetic, I call it the gift from beyond the grave that keeps on giving.🦓
Thank you sooooo much! I believe that I have Heds, and I'm desperately trying to find a doctor to help me with this. This video shows all the things that I go thru. It made me feel finally that I'm not alone, so ❤Thank You Soooo Much!❤ I only have $2 to donate, wish it was more😅
Thank you for sharing Saarah’s story . I just recently saw your video. It’s 5 months now and everything feels same for me as though I’m with Saarah doing things together but cannot feel her anymore. I will be making more video in due course and share some childhood moments and day to day struggles in my forthcoming video. My regards to you Jenni.
17:34 i have heds i am a much older woman with a late diagnosis. My worst symptoms are neck back leg pain Ive had mant different types of migraines and rectal and vaginal prolpase mcas torn rotator cuff aortic tear eye problems dis locations autoimmune deficancy diseases all late diagnosed.And oh so many mis diagnosis andrabbit trails through the years.and no drs in my area or insurence wiil say its Heds or test for any othertype genetically. so it sucks tobe older in pain all the time and everyone sayits somatic and in your head.
I also agree with pain being bad. Thc and Lyrica and tramadol combined help
Crying because how bad I am..... I just wish the pain would end.... I'm watching this with my hair falling out because I move my head and multiple partial dislocations......I just want it to end and all I see it's just going to get worse from here.....
I'm very sorry 😢.....I hope you find a little relief (or a lot of relief!) ❤
I'm deeply sorry. I understand.
Ginger tea sipping has helped my nausea more than any prescribed meds for it.
I have hEDS. My worst symptom right now is probably the joint and muscle pain. It’s the pain that made me super fatigue. But I was so disappointed with my Rheumatologist’s only suggestion is for me to gain weight. She knows EDS, but somehow she thinks gaining weight would just help my joint subluxation....
I'm so sorry you're doctor is not understanding I really hope you can find something that does help. Sending loads of spoons & love your way x
Definitely get another doctor, that is the Opposite of what Dr. Forrest Tennant has ever suggested for EDS where extra weight pulls on our joints. Gaining muscle mass from working out in PT could help specific body parts from more dislocations but it sounds like you really just need good pain control that your doctor is not willing to give you which is a sad unfortunate thing that is happening in the United States against pain patients
Thank you so much for putting this together
I would like to give my testimony
As a child I noticed I was always very weak and scrawny in comparison to other people
I could not touch my toes or swing on a monkey bar
I was normally always used last in gym class unless it was basketball due to my long and bendy arms
Every day I would raise my hand in class my elbow would bend
I had a soccer injury where my leg bent backwards and never ran ever again
What I have noticed about this condition from when I was a kid to now has changed very drastically
Upon being forced to sit from variables and my weakness I believe has locked up certain parts of my body around my joints and vertebrae by both cartilage buildup and tense tendons
In other parts of my body, I barely have enough support to hold it together, if it wasn’t for the overly tense parts holding it into place
Since it’s still difficult for me to make collagen, my muscles are very small and weak, and my skin is very sensitive
My spine is generally where the most pain I experience is
The whole thing about it that does make all the sense in the world to me but doesn’t is how much my brain and heart and body wishes to keep moving as much as humanly possible
I try to force myself to move even more past he abilities of my counterparts/coworkers/friends
To the point where the tense and strictly barely able to move parts of my body take the pounding, usually the next day very immobilized
But when I’m on, I’m on
Even with my locked up spine, even with my cartilage ridden hips, Even with my tendons in the back of my knees being so tense I can’t even bend my leg straight
I feel as if eds used to be labeled as muscular dystrophy and even multiple sclerosis in the past
I don’t understand how I can dance past peoples physical capabilities and able to do things people can’t without this what I consider a disorder and yet when it comes to basic daily life my body burns and dies
Don’t even get me started on the way the mind works with this sort of condition
We connect things in such a level that is beyond comprehension by most people
And often times labeled as being hyper active or unable to listen but it’s mostly due to our condition trying to get out of the chair or out of the situation and onto the next
And that’s where my mind is heading now
I hope some of this makes sense to someone
Thank you for your time
Omg I’m 12 and I have EDS as well!
I do not have EDS but I have lot of pain, the big problem is when they ask you how bad is them pain give it a number between 1 and 10. or I can normal its more painful, brakinh my arm, or a rib, or desolating my hip or knee,
If you're dislocating joints regularly definitely taqlk to a doctor about connective tissue issues. The pain scale is definitely problematic and doesn't really work for people with chronic pain x
The pain scale is subjective. We started stating what we are unable to do because of the pain.
This great, Jenni ! Thank you! xxxxxxxxxx
So glad you liked it x
I have twins who are now 31, have been diagnosed with EDS. They were diagnosed 9 or 10 years ago.
i only became a where of eds was watching amy lee fisher's youtube channel sadly she passed away on the 1st of april 2021 aged 24
Wait... what 🥺 amy lee pased away?
@@mariafmarin3853 her last video gives the date she passed away tom also put a message about her passing away
I'm so glad she helped you become aware of it! Her passing is such a sad loss to the community she was an incredible advocate.
I have VEDS, POTS and MCAS. But despite having multiple organs removed and a subarachnoid hemorrhage I shouldn’t have survived, they are not “officially” diagnosed and I’ve been fighting for several years now to find someone to diagnose me so at least I can be taken seriously as a patient. My current doctors aren’t willing to diagnose it officially because it’s not their area of expertise, but I can’t find anyone that specializes in EDS or connective tissue disorders. At this point I have no hope that I’ll get help before it kills me and I’m in so much unbearable pain al the time, from so many sources, that I am becoming hopeful that I will have another brain hemorrhage or arterial rupture I don’t survive.
My heart goes out to you.
Where are you located? I'm happy to help in trying to locate a doctor near your area. There are a lot of good resources on social media. If I can be of any use, consider it done.
I love you all!! ❤️
I found out I have EDS when I was diagnosed with Chairi malformation.
Thankyou jenni.
This is the first time I have heard anyone talk about csf leaks & headaches & the indescribable level of pain.
Literally I have been entirely alone with this.
It took 23 years of ongoing symptoms for me to be finally diagnosed at aged 53…& even then we do not know the genetic background/make-up of my connective tissue disorder. I have symptoms of both EDS & Marfans including heart involvement; at Oxford they thought our family had both , mixed, each from one parent.
But as I am diagnosed with Marfans, only my heart is monitored…I am on my own with everything else.
Do eds people get dural ectasia?
My neck and headache pain is so bad that while it is happening I have to hit myself in my right leg with a hammer to distract from the severe pain.
We found we had IIH. High pressure in head. We have meds to keep the pressure down.
Thanks for sharing this! All of it lol accept the prolapse I haven't experienced those luckily.. I have had a rupture as an infant but that's it. I am glad awareness about it is out there now. I wouldn't know without patients sharing their stories. 🦓❤️
No problem, the community sharing is so important to helping each other x
A terrific, uplifting podcast I recommend: Getting to Know Your Bible.
-From another Zebra
I know HEDS mist common but, I'd like hear 👂the rest of us other types
I do contact lots of people with different types every year but there obviously aren't as many. I have videos from previous years focused totally on the more rare types x
I'm wondering if blood types connect us in any way???
I was reading through the comments to see the same as I was wondering that also?
Can hEDS cause painful, distended bladder?
Hi Jenni. I have EDS. Mostly Hypermobile but with Classical as well. I'm a fashion blogger and Instagram creator, so if you ever want to ask me any questions for your content, I'd be happy to help. I've covered it in numerous blog posts of my own on my website as well, mixed in with my fashion content, so I'm perfectly happy to be as open and honest about it as possible :)
That second girl didn’t blink! Is that a symptom?
Hello what does a bowel prolapse feel like ? Please help 🙏🙏
Do you mean an anal prolapse?
Hii mam
Hypermobility is autoimmune disease
Yes or no
On its own hypermobility is not an autoimmune disease
Why is everyone in this video young? EDS looks very different in older EDS patients. Please consider better representation, younger people should know what life will be like when they're older and older folks want to see themselves represented.
Hey, it's been a few years since I was able to make these videos but every year to make them I would put a call out across all of my channels so anyone and everyone was able to get involved. If I'm able to do videos like this again in the future I'd love for you to get in touch so I can include your perspective. Thanks so much xx
@@ChronicallyJenni Hey thanks for the reply and hope you're keeping well. If you do, feel free to reach out!
Has anyone else had permanent and total loss of their smell and taste ?
That would be a neurological issue I would check with a neurologist
COVID?
We need a young clyb for eds, not to keep older folks put, but to help those who are young and dont use facebook, and can see themselves in each other. Im speaking on behalf of my 16 yr old daughter
Progressive weakness.