My first video- My Life with vEDS (July 9, 2017)

I've decided to start this blog. Going to be talking about Vascular Ehlers Danlos Syndrome (or Type IV), and my life with it. Hoping to post once a week or so.

[@shannongreenwell1278]

Praying for a cure for EDS especially the vEDS . I have the Classical type and it is so painful, but yours is life- threatening…scary! I pray that God gives medical personnel the knowledge to come up with the cure! With HOPE and Payers brings Miracles!!!

[@SarahGerster]

Thank you very much for sharing. It means a lot to me. I'm alone and a bit scared, waiting for my results. I hope the best for you and will keep checking in and see how you are doing. Gentle hugs💜

[@TranslucentOne]

I hope the best for your results! Feel free to reach out anytime. Especially if you need someone to talk to if your results come back positive. I hope they don’t!! 🤞🏼

[@SarahGerster]

@@TranslucentOne thank you so very much. You also tone if you need to talk. 💜

[@Lea-pr2ko]

Hi Katie. My self and daughter have recently been diagnosed with hEDS ( I’m 39 and my daughter is 11) We have also even more recently both been diagnosed also with life threatening AAI, and CCI, and myself also Chiari - Malformation And blocked jugular vein. Our EDS Specilist Surgeon suspects though that we in fact both have vEDS... We are going to begin with genetic testing for my daughter and take it from there... This whole thing and all our diagnoses, are obviously very frightening. Both my daughter and I do have some symptoms of vEDS, but not all of them. We both have suspicious and unexplained bleeding at times, quite translucent skin, and I have aged looking hands and feet and receding gums... We are both hypermobile enough to pass criteria for hEDS though and I have stretchy skin in the common areas of EDS, but it’s not the worst for some one with EDS... What are your opinions on the lightly hood that some one has vEDS without having all the “ classic symptoms” ? Neither of us have the “vEDS nose” and though I especially do have tiny ear lobes.. I do have lobes.. I know that research and knowledge on EDS is so lacking but research on vEDS even more so and opinions even among EDS Specilist on things can differ. As some one with vEDS, do you think that it’s possible for a mother and daughter to have different types of EDS? Or if my daughter tests positive for vEDS, does it mean I have vascular too and there would be no point in paying for testing for me too and just assume I have vascular type? Sorry for the long message and maybe with this video being so old, you won’t see it.. if you do though thank you for your Chanel I have subscribed and will love seeing more of your vlogs 🦓💜

[@TranslucentOne]

Hey Leanne, thank you for reaching out! I now work for The Marfan Foundation as the director of The VEDS Movement. We have a wonderful Help and Resource Center where you can get your questions answered, and we also have an Awaiting Diagnosis monthly virtual support group for people who are suspected of having VEDS and are going through the diagnosis process. Please check out thevedsmovement.org and visit Resources-> Ask a Question, or to join the virtual group, visit our website and look for Virtual Support Group under the Resources tab. Again, so glad you reached out! I hope you don't have this, but if you do you have a wonderful support system waiting for you. Best wishes to you and your daughter.

[@Lea-pr2ko]

Hi again Katie, Thank you so much for your reply! I tried to reply at your reply to me but there wasn’t that option so I hope you see this reply here. I will go to the link you gave me ASAP thank you so much! 💜

[@katkaplan3]

New Subbie here- just found your Chanel. I’m prob twice your age, but only officially dx hEDs about 3 weeks ago after a 10 month wait for genetics appt, 4? Years of really researching and dx myself.. abs a lifetime of pain and drs not listening to me or connecting alllllllll my symptoms/issues (gastroparesis, severe degenerative Kyphoscoliosis, pots, mcas.... and on and on) the blood work says no to vascular, which still surprises me, I seem to have a lot of crossover issues between veds, hEDs, classical... but just the validation of being able to say I have “ THIS” after all these years... great vid, can relate to so many things you said. Will watch all your vids 👍🦓🦓🦓❤️

[@TranslucentOne]

Welcome! :)

[@sharonmiro]

HI I have veds too! I too suffer from neck and shoulder pain which cause cluster headaches daily.

[@TranslucentOne]

I'm so sorry you have this too! Have you found anything that helps with your pain?

[@drunkxcookie3761]

I have vascular eds as well. I am glad I'm not the only one. And im glad u made this vid, and I stumbled across this vid. I'm going to subscribe!

[@TranslucentOne]

Thanks for finding my channel and listening :)

[@lilmilt28]

You're glad you're not the only one🤔sounds selfish

[@nicolewale888]

lilmilt28 who hurt you?

[@joshs2444]

Does anyone know if it's common for people with veds to develop pots/dysautonomia? Or if it's even possible? Thanks.

[@TranslucentOne]

I know a couple people with POTS and vEDS, but I’m not sure if it’s as prominent. It’s a good question

[@1Leggedgamer]

hey katie I have been watching you vids the dr at UW told me about you I have VEDS and I am learning about it a lot lately thanks for the vids so I know what to expect

[@TranslucentOne]

Hey Justin! Glad you are connected with them at UW. Also glad the videos are helpful! Have you checked out the podcast? You can hear others' stories too there. translucentone.blog/category/staying-connected/ There is also a ton of info and helpful resources, like support groups, at thevedsmovement.org

[@ottonitschmann5104]

Hi Katie, I'm Otto. I was diagnosed with Vascular EDS like 2 weeks ago. I am still learning a lot about what it is and how to live with it as well. Are you aware of any online support groups? or something in the states? I found a large EDS community but not a whole lot on vascular...

[@TranslucentOne]

I'm so sorry to hear about your diagnosis. Are you on Facebook? It was hard for me to find a group.

[@ottonitschmann5104]

Translucent One I am. What group did you find?

[@TranslucentOne]

Otto Nitschmann facebook.com/groups/Vascular.Zebras/

[@ottonitschmann5104]

Got accepted in the group. Thanks!

[@shannongreenwell1278]

My prayers are with you!

[@jilliangreen8435]

I think i have this..thank you for posting this

[@TranslucentOne]

High Healed Hippie glad you found my channel! I hope you do not have this, but if you find out for sure that you do, know there is a great support network out here for you. Feel free to reach out anytime.

[@jilliangreen8435]

Translucent One thanks for replying. I am being referred to a geneticist to find out for sure, but I am pretty sure..my grandpa died from it at 57. I will let you know. Medical mj has helped me manage my symptoms alot. I can relate yo everything you shared. Blessings

[@juliefarrell3957]

Thank you for sharing....I fear I have this type

[@rgchicagomikey]

Good video. What does the pamphlet say? Can people with vEDS order the pamphlet online?

[@TranslucentOne]

Michael Webb thanks for the questions! I will look into if you can order it online and go over the book more in my next video :)

[@TranslucentOne]

Michael Webb new video is up with that information. Thanks again!

[@helenbakewell3040]

I have this yes I had to make my latest doctor Google the information as my doc who diagnosed me went away in Australia they did not understand it especially vascular Ed's but a wonderful vasc surgeon who is 82 yrs old knew his son has this he is wonderful he is teaching surgeons how to deal with this and has a injections that help the veins to not bleed out and he has helped me live longer but so much more I formation is necessary for helping those not informed about our problems please read about this condition as it's scary to us who have no idea we have til diagnosed and have to live with it thankyou to the brilliant minds of surgeons who take this on

[@TranslucentOne]

Hi Helen! That is wonderful about your vascular surgeon. I am curious what kind of injections?

[@lilmilt28]

Hey I need some info please about those injections, thanks

[@agnieszkawright9504]

Is it true that veds have short life expectancy?

[@TranslucentOne]

Agnieszka Wright unfortunately yes. Median is 51, many have serious complications by the time they’re 30.

[@agnieszkawright9504]

Translucent One What doctor is best to see if you want to get tested? I think I have some type of eds. About two years ago my friend noticed that my elbows bend and said I might be double jointed. So I looked it up and I have all symptoms of hypermobility(hands, thumbs, fingers, knees, elbows all have extra range of motion) I also have lots of anxiety, brain fog and fatigue and all that escalates as the day goes by. My hands look just like urs, I have bulging veins on hands and feet and my grandma passed away in her forties due to gallbladder rapture. After watching your video I started connecting the dots.... Thank you for sharing this!

[@TranslucentOne]

Agnieszka Wright find a way to a geneticist familiar with EDS. The first geneticist I saw dismissed my concerns for vEDS and I didn’t get the diagnosis until several years later when I begged for a genetic test. If you need a referral you could try an internist or talking to your primary first. What state are you in?

[@agnieszkawright9504]

Translucent One Thank you for that info, I live in NJ

[@TranslucentOne]

Agnieszka Wright www.fighteds.org/find-a-doctor Fight EDS has a good website dedicated to vEDS. This link has a list of some of the physicians in the US with experience with vEDS. Maybe you can get in with one of those!

[@teazilla7750]

My geneticist thinks I might have a crossover. She has not ruled out vEDS; but one of my friends says that I do not have the nose for vEDS. Aw.. I sorry. I have had a loot of crazy vascular things lately. Hugs and Love.

[@TranslucentOne]

Has your geneticist done a genetic test? Some people have vEDS but not very obvious facial features/characteristics, so just because you don't have the nose wouldn't necessarily mean that you don't have it. Sorry for the late response on this one, I've been caught up in a big move. Hope you are doing well!

[@brencat6715]

hi omg i have veds too!!!

[@TranslucentOne]

Hi! Thanks for finding my channel :)

[@timstark9607]

who here has that from Austria? or Germany?

[@TranslucentOne]

Tim Stark I’m checking in with some people I know to see if we have anyone in the group from there. I’m sure there is someone out there! Whether we know them is another story.

[@timstark9607]

Translucent One Hmm okey Thanks :D where you from ? :)

[@TranslucentOne]

I'm in Florida now; when I was diagnosed I was in Washington state!

[@TranslucentOne]

I'm in Florida now!

[@timstark9607]

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