Lupus resources
I went to an Educational Coffee event put together by the Lupus Foundation’s Illinois Chapter yesterday. it was small. only myself, my partner, another young woman, another woman and her partner, and the woman who was giving the presentation. it was informal. she had many paper materials to give us. One of them was a list of different resources for those living with Lupus. I think many of these resources would be helpful for others living with disease or disability - it doesn’t have to cater just to lupus patients.
One of the main resources was the Lupus Foundation of America. This foundation has many resources including information about lupus, awareness initiatives, support groups - it even can help with doctor referrals.
Some more helpful resources i thought:
State of Illinois Health and Wellness
Free or sliding scale clinics
- Cook county hospital - 1901 Harrison
- Access Community Health Network - 317.257.6770
- Loyola medical center - 888.584.5300
- University of Illinois Medical Center/Miles Square Clinic - 312.996.2000
- Pilsen Clinic - 312.996.1938
She gave many more resources which i will touch on at another time as well.
One of the lupus foundation’s awareness initiatives was the “could i have lupus?” initiative. lupus is still a little known disease. a lupus diagnosis on average takes 4 years and 3 different doctors. that is horrendous. during this time, patients suffer pain and organ damage. most of these patients are women - 90% - and it is two to three times more prevalent among people of color - so, basically, it appears that it is most common amongst women of color.
does this have any affect on the amount of research that is done on this disease? does this have any correlation to the obscurity of the disease even amongst the medical community? why does it take so many doctors to figure out what these symptoms are telling them? why, in the top 100 doctors in chicago, for rheumatology, only 2 doctors have lupus listed as their specialties? shouldn’t lupus be more recognized? why is it so easy for those with the disease, to pass through life in pain, not looking diseased, but suffering a chronic and life-threatening disease?
