Rare Diseases Awareness Campaign in Second Life

[Wesley Regenbogen]

Hello everyone,

I want to do a rare diseases awareness campaign ( not fundraising ) in Second Life.

Since I have never done anything like this before, I need some help.

 

If anyone is willing to help me out, please let me know.

 

I recently found Dazzle4Rare ( http://www.dazzle4rare.net ) and the founder told me that I could do something in Second Life myself, because they are unfamiliar with Second Life.

Dazzle4Rare runs from August 11 th until August 18 th, I know it's already running ....

 

Thank you very much.

 

Kind regards, 

 

Wesley Regenbogen

[Luna Bliss]

You might try getting some ideas from the people at Virtual Ability:

https://www.virtualwholebrainhealth.org/calvai/

[Wesley Regenbogen]

Yes, I know about Virtual Ability, but they are more focussed on disabilities, right ?

 

Ok, you can say that having a rare disease ( I have a rare disease in real life too ) is a hidden disability, one that you can't see.

 

 

[Luna Bliss]

4 minutes ago, Wesley Regenbogen said:

Yes, I know about Virtual Ability, but they are more focussed on disabilities, right ?

 

Ok, you can say that having a rare disease ( I have a rare disease in real life too ) is a hidden disability, one that you can't see.

 

 

yeah I never thought about that...

I suppose most diseases cause some sort of disability (disability being defined as making it more difficult to function), but not all.

 

[Luna Bliss]

But yes, there are so many hidden disabilities. Unfortunately they have the most trouble getting help when needed, like financial support. They also have trouble socially as often people don't think someone is disabled if it's not clearly visible.

[Wesley Regenbogen]

Yes, this is true.

 

 

[Luna Bliss]

And what some people label as disabilities (like Autism) can actually cause superior functioning in other areas!  It's complex..

[Cube Republic]

Yeah weird serendipidy, I'm having a bad day because of my rare disease. Arn't I the lucky one, trigeminal neuralgia is my flavor.

 

If you need any help reach out, I've got the same name in-world. 

[Wesley Regenbogen]

My goal with this rare diseases awareness campaign is to unite people with rare diseases and educate people about rare diseases and raise awareness for rare diseases too.

 

 

[Prokofy Neva]

I'm going to give a (not surprisingly) contrary opinion here, take it or leave it, I think other people wouldn't even want to post on the often nasty forums with some admission of their vulnerability.

I have a rare disease (one in a million or less) called mucous membrane pemphigoid, which makes me immunocompromised.

Back when I was diagnosed more than 10 years ago, I vowed that I would never spend more than 30 minutes a day thinking about, Internet-searching about, talking about, even *treating* this disease (I have a dozen different medicines). I just didn't want to become a lost soul going to support groups and trying to get Congress to name a day for my disease or "raise awareness" about rare diseases because...why? I wanted to try to live my live despite the disease.

Because they're rare. I'm fortunate to be right across the street from two of the world's greatest specialists on this disease. They have 5 patients, some come from as far away as North Carolina. It can be tough to treat if you have a severe version that has spread and never been put in remission, like me. 

I think the focus has to be on cancer and COVID, myself. Why? Because they affect many more millions of people. I am a major critic of Fantasy Faire's exclusive focus on cancer, but I take a seat now and then because many people among the organizers lost someone to cancer or have it themselves, and some of the great designers associated with it died of cancer (Bee Dumpling, Spyralle's Kerryth Tarantal. I think it would be good to switch up now and then and do "immune diseases" or perhaps "muscular dystrophy" or something. But ok, it's their event, they can do as they please. As can you!

Over the years, especially with COVID, it has gotten harder and harder to keep to the 30 minutes especially as I go to at least 8 doctors every 3 months and it takes up an enormous amount of time going to the appointments, waiting for them, taking all the tests, going to the surgeries, recover, blah blah blah.

So forgive me if when I come to SL, I want to do something else. There are great support sims and groups in SL like "Virtual Ability" -- it's just not my thing.

Good luck!

Edited August 14 by Prokofy Neva

[Clem Marques]

On 8/12/2024 at 11:21 PM, Luna Bliss said:

But yes, there are so many hidden disabilities. Unfortunately they have the most trouble getting help when needed, like financial support. They also have trouble socially as often people don't think someone is disabled if it's not clearly visible.

This is very true. Sometimes people don't believe the disability even exists, or fail to grasp the seriousness of it just because it isn't immediately and visibly obvious that the person is facing that struggle. That might result in the disabled person being socially ostracized or doubted/ridiculed for their issues due to the ignorance of others regarding that subject. Awareness can help to minimize those issues, and it can foster an environment that is more welcoming and accessible to the disabled person. Those disabilities can impact the way someone approaches RL, and it can also have certain effects that bleed into SL.

I'm visually impaired in RL and cannot stand full-bright objects or very bright EEP settings in SL. On bad days, I sometimes find myself having to use the "midnight" setting with shades on, my monitor on the lowest brightness setting. I have two other SL friends in a similar situation. Is it uncommon? Most likely. It's often something creators don't consider at all when they create their products or even build their stores. Those hyper-white full-bright locations that can't be affected by environment settings (like a certain hair store...) are completely inaccessible to me and others inworld. I don't expect anyone to cater to the tiny minority of visually impaired people in SL, it would be unrealistic and entitled to do so. But it would be nice if creators and venue owners were aware that they are actively excluding a small (but perhaps significant) part of their customer base by using full-bright everywhere. 

Awareness is always positive and helpful, regardless of whether we're talking about uncommon or common disabilities and diseases. Fundraisers can sometimes be shady, but I don't see anything wrong at all with just trying to make an awareness campaign. That can only help. I appreciate the initiative and I am wishing you good luck with it, @Wesley Regenbogen.

Edited August 14 by Clem Marques

[Luna Bliss]

4 hours ago, Clem Marques said:

I'm visually impaired in RL and cannot stand full-bright objects or very bright EEP settings in SL.

I appreciated connecting with you on that thread where we were lamenting about super white stores. I've got a problem with that too, though not as severe as yours, but is associated with a larger medical condition that causes a lot of fatigue.  I don't know how or why, but when we connect with others in similar situations it helps, at least for me and some others I know. When my daughter was diagnosed with brain cancer I reached out to my store group and found a few people undergoing similar circumstances, and we compared notes -- I found it healing.

Also, the people at Fantasy Fairre were sooo nice the year I was setting up my booth at the Fairrre and dealing with my daughter at a crucial stage.

[Luna Bliss]

6 hours ago, Prokofy Neva said:

Back when I was diagnosed more than 10 years ago, I vowed that I would never spend more than 30 minutes a day thinking about, Internet-searching about, talking about, even *treating* this disease (I have a dozen different medicines). I just didn't want to become a lost soul going to support groups and trying to get Congress to name a day for my disease or "raise awareness" about rare diseases because...why? I wanted to try to live my live despite the disease.

I think it's when one first encounters a disease that more support is needed. It can be quite a shock, and one doesn't know how to deal with it and so looks to others for some support. I agree though about staying stuck there and spending too much time focusing on the disease instead of actually living!  However I do admire people who use their experience to become activists via raising awareness and advocating various treatments for themselves and others suffering from the same condition.

[Love Zhaoying]

One reason rare disease awareness is important: In our modern world, it doesn't take a lot of time for a "rare" disease to suddenly be a disease that affects someone you know and love. Then, without awareness campaigns, you're asking "why nobody told us about this" and struggling to find an advocacy and support group.

[Wesley Regenbogen]

2 hours ago, Love Zhaoying said:

One reason rare disease awareness is important: In our modern world, it doesn't take a lot of time for a "rare" disease to suddenly be a disease that affects someone you know and love. Then, without awareness campaigns, you're asking "why nobody told us about this" and struggling to find an advocacy and support group.

 

Yes, this is the whole point of what I want to do it.

I have a rare disease in real life too called Thalassemia ( http://en.wikipedia.org/wiki/Thalassemia ) but luckily for me I have the less severe version and I can lead a normal life with it.

I met someone in Second Life that has a rare disease called Alpha 1 and she and I want to raise awareness for rare diseases in Second Life and on Facebook too.