Having Uveitis and how i may be losing my vision, permanently

[@monadeWH]

Hi Kassidy, first of all - you are very brave to talk about all this and thanks for sharing your story. My journey started when I was diagnosed with Uveitis about 3 years ago - when I had my consultation I realised that I had it for a very long time and understood why nothing came up when I had medical checkups including brain scans as I have suffered migraine and pain for years which I discovered it was caused by high eye pressure. I know when people say 'I know what you mean and what you are going through' sometimes it only is a saying, but I truly do understand what you mean and what you are going through with Uveitis. Your story is like listening to my own. I've had my share of treatment including the steroid drop since the beginning and had my first surgery to replace my cataract. I've been on half a dozen eye drops at one point and now currently on three and taking the oral pill for my eye pressure. Yes, I am on what people would consider a maximum level of treatment. As I have inflammation which in my case is a viral infection in my eye and extremely high eye pressure on average which is causing difficulties to treat my eye. It's a 'chicken first or egg first' situation as can't treat one without affecting another. Glaucoma damage is no longer an 'if' situation but has begun due to high eye pressure, and possible blindness feels like more of 'when' rather than 'if'. I am in my mid-30s working as a graphic designer - now I am at a point where I need to consider how many more years I could work as a graphic designer. When I was diagnosed, I accepted it because there are people who live a fulfilling life with complete and/or partial blindness. It's not something I can change but adapt and I know I can do that. I am a realist so I do think about the possibility of blindness in my future, but I don't live with the fear of it. It won't be easy and will hurt at times. It will frustrate you and knock you back a little. But, as you said, live positively and embrace it because it's your life and you only have one. You have to be happy with how you live or want to live your life because no one will live your life for you. So, good luck and I truly wish your Uveitis gets under control and best of luck with your other autoimmune disease.

[@pandasrox1]

Wow this is compelling and inspiring. I have come to a similar peace with it as you. I wish you the best years with your vision, I hope the pain lessens, and I know you’ll be amazing when the time come and you lose your vision. Thank you for sharing your story. ❤️

[@jilt8770]

Thank you for sharing your story, Kassidy. I was just diagnosed with intermediate uveitis a week ago. It's on my right eye, I'm currently on steroid eyedrops. I haven't told anyone yet and to be honest it's starting to scare me and can't help but cry thinking I can go blind from this. But watching your video and reading these comments makes me feel not so alone. But yeah, life is still beautiful and it must go on. Let's all stay strong.

[@pandasrox1]

You’ll find a point when you’re ready to share. No need to rush it. I created this platform so that people like you, me, and those in the comments could get their feelings out. So that everyone can talk without fear. Know you are strong and can make it through that, you just have to figure that out in your own time. I cried a lot on the beginning. A part of my healing process is sharing. Much love and luck to you! I am here as well as others for support. You are still your incredible self❤️ Don’t forget that

[@emmaneilson9965]

I have this in my left eye. You're right, you need your liver!!! I came down with autoimmune hepatitis, and a slew of other autoimmune disorders. It is so depressing in the beginning (not just the beginning) your life completely changes. Independence slows, but it makes room to allow others to help you💗it's hard to be young and accept help, but please reach out if you need some. The "what ifs" are so much more scary than the actual happenings. If you get a crohn's flare with vision loss, you'll still be OK. It is NOT fair. Having multiple diseases that are life long is not fair in the least. It seems the kindest ones on earth get hit with the most suffering. You're going to be ok❤❤❤

[@Mopro11]

Feel your pain, i´m dealing with chronic uveitis as well! had it for like 13 years now. I am a 21 year old guy, and shiit! All the stuff that you mentioned has already happened. I´ve had cataract, "Loose cornea", dealing with high pressure. 20% vision in my best eye. Its fucked up, but life is still amazing. Only advice i could come up with that i am trying to live by is to make sure most things possible done with sight is done now. Would highly recommend to move to a place with easy accessible public transportation, or get enough money for regular uber spending. I don´t think im that good at this, but yeah you are not alone!

[@pandasrox1]

Mohammed Fidar Thank you for sharing you’re story. I’m also 21 and it is damned scary. One of my biggest ways is coping and communicating with others in similar situations (not the easiest with this disease but thank goodness for KZbin). I’m still working my butt off fulltime and going about my life with my vision for as long as I have. Luckily I do live in a good place as far as public transportation. Best of luck to you in your journey. We are here✊🏻

[@jude1515]

I understand the Uveitis. At this point, I only have it in one eye, but as you know that's enough. Prayers to you.

[@zohaibtahir8433]

Hey stay strong. I'm 24 and I got diagnosed with bilateral anterior uveitius 2 months ago. I'm waiting for my my appointment with a rheumatologist. Mental strength is the most Important thing now, atleast that's what I feel. We will all get through this, and come out stronger..

[@cherrysimmons9694]

God bless you sweetheart I’m going through the same thing ❤️

[@pandasrox1]

Rodney Simmons God bless you on your journey as well!

[@cherrysimmons9694]

Angel Hugs xoxo ❤️❤️❤️

[@nicoleckjohnson]

oh my gosh I was planning on talking about this on my channel because I have it as well ! Im glad I found another young girl that shares the same condition as me . I got it when I was about 5 .

[@pandasrox1]

That is really young! I encourage you to share! I need to make another video, but life has been crazy. Stay strong

[@chloecanning2930]

I have bilateral anterior uveitis and I have this for just over 2 years and been through many doctors that just gave up on me and passed me to the next doctor.

[@pandasrox1]

Chloe Canning I have bilateral posterior Uveitis. Keep advocating for yourself and don’t give up.

[@chloecanning2930]

@@pandasrox1 currently I get seen by a good doctor and lately my eyes have been feeling OK so hopefully when I go back to hospital it will be good news

[@pandasrox1]

I’m really happy for you Chloe !💕

[@TheWatchDawg14]

I feel your pain...I'm dealing with chronic uveitis & have been on steroid drops for 7 months now. Being on these drops long term is scary & can cause all sorts of problems. Does yours ever go away? And if it does, how long before yours comes back again? it looks like they may put me on something to take by mouth. Have they ever mentioned that to you? Anyway I wish you the best & good luck.

[@pandasrox1]

Hello! Thank you for sharing. Yes mine does go away at times, but not typically for very long. There is no pattern I can establish except if my crohns is flaring so are my eyes. No pill has been introduced to me yet. I have a lot of restriction on what medications I can take due to me hepatitis B (which I will talk about in my next video). I feel your pain. I hope the pill works for you and you can discontinue the eye drops/ hopefully they'll find a cure some day!

[@TheWatchDawg14]

Thanks, I know how terrible it must be for you, especially at your age. I wish you the best & thanks for the video, it always helps to see how other people are dealing with it. Take care & good luck!!

[@pandasrox1]

TheWatchDawg14 That’s my goal with these videos! You take care as well and good luck:)

[@mustafidebrahim9122]

By the way there is nothing to worry about uveitis 1 had it for five months and it cleared itself I first tried using corticosteroid for 1 week but I feared serious symptoms so I just left it like that and all the dark spots dissapeared

[@chrisr838]

I'm so sorry you have to go through this. So what medication do they have you on now?

[@pandasrox1]

Chris Ramos I am currently just taking steroid drops for flares. Each person has their own journey through life and this is just mine, thank you though.

[@emiitchi4232]

I have Chrohns and use remicaid? Did you say the infusions gave you hepatitis B?

[@TheEquestrianDreamer]

Hey there! I'm 20 and I was just diagnosed with posterior uveitis with retina and choroid vasculitis, so it's getting pretty complicated. I haven't had any vision loss yet but it's a scary thing to be diagnosed with, hope you're doing ok!

[@Basharkk]

Escapable46 how are you now?

[@LokeshKumar-sk3wd]

I have posterior uveitis since 2012.

[@chrisr838]

Also, have you ever tried Restasis eye drops?Cyclosporine is the active ingredient and it works as an immunosuppressive. It does have an off-label use for uveitis and could possibly keep you off the steroids.

[@pandasrox1]

Chris R I have not yet! I don’t think I have heard of it. Thank you for the suggestion ☺️ When it starts flaring bad again I can approach my doctor about it.

[@candygirl171]

I have uveitis too. It’s really odd because it always flares once a year in July or August months. I wonder if it’s due to some allergies? Also, question, are you saying that if you have uveitis, you will go blind it’s just a matter of time?

[@pandasrox1]

I was trying to convey under my unique set of circumstances with several conditions it can be a reality to go blind for me

[@candygirl171]

Thank you Kassidy for replying and sharing your story. I am so frightened to lose my sight. When I first experienced my first flare, I thought it was just pink eye. I have been reading about it on different sites and the more I read about it the more I worry about thinking blindness. I pray for you and me and everyone going through this they will figure a way to cure it. I am so alone in this and I hope we can be friends. Thank you for listening to me rant. Thank you for being so brave and strong! Hugs 🤗

[@Basharkk]

candygirl171 it happens for you only once a year? Other than that it's fine?

[@smdt6744]

Hope u see my comment

[@chrisr838]

How's it going now? Any update on your eyes?

[@pandasrox1]

Chris R My Uveitis has not been flaring much lately (thank goodness). I’ve been working for a while to get another video up but my phone keeps causing me issues. I promise to make another sometime soon.

[@TravellLove]

The background music is too loud though

[@pandasrox1]

Noted