Lupus Awareness Month Resources

With May being Lupus Awareness Month, we wanted to share some facts and resources about a disease that impacts over one and a half million Americans, the majority of whom are women between the ages of 15 and 44. Recently, it has been reported that women of color are two to three times more likely to develop Lupus with Lupus.org saying that 1 in 537 African American women will develop some form of Lupus. Although 10-15% of individuals with Lupus may die due to complications of the disease, most, with the right treatment/management, live a normal life span.

Here are some symptoms to look out for if you believe you may be suffering from Lupus. Lupus.org says that the most common symptoms are extreme fatigue, pain or swelling in joints, hands, feet, or eyes, headaches, fevers, sensitivity to sunlight, and chest pain when breathing deep. Other more specific signs could be a butterfly-shaped rash on the face, hair loss, sores in the mouth or nose, and developing Raynaud’s Disease which is when your fingers and toes turn white or blue and feel numb when you are cold or stressed. Early detection is extremely important in cases of lupus so if you believe there is even a chance you have lupus, it is encouraged that you contact your doctor right away.

There are four forms of Lupus including systemic, cutaneous, drug-induced, and neonatal lupus. Lupus.org is conscious about the lack of knowledge surrounding Lupus and because of this, details each form in detail. Starting with systemic lupus which accounts for 70% of all cases of lupus. Usually, in systemic lupus, a major organ or tissue in the body, such as the heart, lungs, kidneys, or brain will be affected. About 10% of all lupus cases are cutaneous lupus which affects the skin, and another 10% is drug-induced lupus which is caused by high doses of certain medications. Lupus.org says that the symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually go away when the medications are stopped. The last and most rare is neonatal lupus. This is a condition where the mother’s antibodies impact the fetus, Lupus.org says. The baby may have a skin rash, liver problems, or low blood cell counts, but, thankfully, these symptoms typically disappear completely after six months with no lasting effects.

After a diagnosis like this, it is beneficial to talk to other people who have been through the same thing that is why there are hundreds of Lupus support groups available nationally and locally. The Lupus Research Alliance is a national network with a community blog and community forums along with videos of lupus survivors telling their stories or discussing various symptoms of the disease. Another national yet personal support group is called Lupus Warriors. As for the Philadelphia and Central New Jersey area, there are many support groups that can be found by clicking here. Lastly, there is a great system of support through ASKLupus.org. This organization is based in Philly and offers support, services, and hope to anyone who has been affected by Lupus in any way.

There are multiple ways to donate to lupus organizations or to those living with lupus. There is the Lupus Foundation of America where you can donate either nationally or to a specific chapter. Local chapters include the New Jersey chapter, supporting all northern counties in New Jersey, south through Mercer and Ocean counties, and the Philadelphia Tri-State chapter which supports Philadelphia, Central and Eastern Pennsylvania, all southern counties in New Jersey up through Burlington county, and Delaware. You can also donate household goods including clothing, housewares, toys, and small appliances, and invest in lupus research. There is also an annual walk called “Walk To End Lupus Now” event that will be held virtually in October this year. How it works is you first register, then you fundraise and spread the word for lupus research, support and education services, and finally, you walk with your team!