View Full Version : Confused and a lttle hurt!
03-04-2009, 01:17 PM
Yesterday, while searching web for Lupus support groups, I came across one that sounded nice, and interesting. When I tried to sign up, I was denied. When I asked why, it was because of my race. I thought well thats nice! I look at everyone else as my equal. I thought that since the other members had Lupus, we could relate and share and encourage, but I guess I was wrong. What should my race do with it? Sorry, just a hurt.:(
How wierd is that . I know that Lupus is more prevalent in certain races but am surprised by the exclusion of a forum because of that - unless the site is about trying to find genetic and environmental triggers specific to certain races.
03-04-2009, 02:20 PM
You're kidding, right....they actually asked you your race? Was it in a questionnaire you filled out first? Did you ask them which races were allowed in?
I am in utter disbelief............ :(
*shaking my head and rolling my eyes*
03-04-2009, 02:22 PM
I was told African American an Hispanic women only. I guess i wear my feelings on my sleeves.
03-04-2009, 02:35 PM
I cannot even begin to understand this one....we are accustomed to being put off by people who don't understand, but these people have to understand.....why would they reject anyone seeking help. Oh well, glad you found us....we love everybody.
03-04-2009, 02:43 PM
What difference does is make if you're purple, green or pink?
I, too, would be upset because we're reminded daily about equal rights. For someone/an organization to say you can't be a member because you're not of a certain race is garbage.
Sorry that you were treated so shabbily (is that even a word?) by the uninformed. They are the losers because you have so much to offer fellow loopies :)
03-04-2009, 02:50 PM
Thanks everyone! You all always make feel better! Appreciate everyone
03-04-2009, 03:30 PM
Their loss our gain :) You ignore them :) Sending you hugs.xxxxxx
Actually I think I have to point out that these races along with Polynesians and Asians are afflicted with Lupus in far greater numbers than Caucasians - so as we all know money is not thrown at this genetic prone research as life saving strategies are the priority. So perhaps this might simply be a case of trying to figure out as a community if there are any similar environmental or genetic factors within races. If that is the reason I can understand it -because information about this stuff is not researched in any capacity and sometimes you have to figure this out yourself or in a similar grouping to find answers.
So this may not be a case of discrimination because medically speaking race based research is essential because of the many phsiological differences in races. People of colour have different pigmentation and tannins in their skin, they heal faster and scar more, they are born with the mongolian bruise on their back and the list goes on....Are Lupus rashes different in these groups?
In medical forums I think race based support groups may just be about these differences and finding a core of people who can support each other the best with their physical symptoms.
I know that here in my country- race based research and race targeted healthcare has statistically proven to greatly improve the health treatments of minorities. The one size fits all approach failed to recognise the physiological and lifestyle differences that affected diagnosis and treatment.
If it is okay for medical professionals to research along these lines it should also be okay for those afflicted to be able to make the same connections and decisions.
I can understand you are upset but maybe in this medical forum case this may not be about you personally.
However while I think they should have one open section in their forum for all races - I think that leads to more contention and issues so I find it difficult to condemn them.
03-04-2009, 04:24 PM
oh my word,
now that i do not believe....
what a bunch of................ anyway u get me....
For various reasons, the site Admin/Owner tries to avoid complaints and problems with other websites from being posted here on WHL. With that in mind, I'm going to lock this thread. It will still be here to read, but new comments will not be allowed. In closing, just know that you are 100% welcome here Katroach.