Erin Holland Friends and Family,
This was supposed to be my fourth year participating in the Walk to End Lupus Now. The walk has been rescheduled to Oct 31, but if COVID19 flares up again, it's not likely that those of us who are immunocompromised will be able to risk being out together. So we'll plan for the worst and hope for the best. All of my fundraising will be done virtually for now. As a lupus thriver, I'm all in when it comes to fundraising for research and a cure. There is so much that isn't known about this disease...and it's truly debilitating. Any support that you can give is greatly appreciated!! Click on the link to donate!!
Erin's Story: As many of you know, I got really sick in January of 2015. After a year of horrible and debilitating symptoms and illnesses, I was diagnosed with Systemic Lupus Erythematosus (SLE) in January of 2016. SLE is the most common form of lupus. Lupus is a chronic autoimmune disease that attacks any and/or multiple organs. There is no cure and there are limited options for treatment.
Each lupus patient has different issues. For me, lupus attacks my joints, muscles, lungs and most recently my heart. Those with lupus also typically have other issues; I have a rare skin disorder and a blood clotting issue that we regulate weekly. I've had two other diagnoses in 2019 and had to have 6 months of chemotherapy. Arrgghhhh!!! My main goal every day is to regulate my pain so that I can try to go back to work and to be able spend quality time with my family and friends. I used to be quite athletic…and for the past 4+ years it's almost been impossible to walk around the block, let alone workout. With my new treatments, I seem to be getting stronger, gaining weight (who is ever happy about that?!?!) and working on getting my stamina back. Lupus has changed not only my world, but my family’s world. I just can’t do what I used to. I do miss my old life, but I am resigned to the fact that I have a new life, so I’m doing the best I can with what I have.
Overall, I’m pretty fortunate:
1) We have an unbelievable support network comprised of family and friends.
2) My employer offers really solid health insurance.
3) Our connections to people who are willing to go the extra mile to help us figure out my issues have been incredible.
When dealing with a chronic illness, these are the things that matter.
Treatment is limited. I am on an extensive mix of medications. Only ONE drug has been developed to treat lupus in the past 50 years…yep, you read that correctly. And, it’s very cost prohibitive. If you don’t have great insurance, you won’t even get it offered to you. The medications that I’m on have crazy side effects: my hair falls out, I get rashes, and boy can I get really weepy and crabby.
I am committed to raising awareness about lupus and fundraising to help fund research for treatments and a cure. I must help raise money for researching this horrible disease; I don’t want others to suffer in the future. Will you make a donation to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus? A generous contribution of $25 or $250 can make a definite impact. What’s more, if your employer offers a Matching Gift Program to employees, you may be able to double your contribution with just a little bit of paperwork. Trust me, it’s worth the effort! Every single dollar counts.
Did you know?
- Lupus is a mysterious and misunderstood autoimmune disease. It strikes without warning, affects each person differently, and has no known causes or cure.
- Lupus symptoms can be severe and highly unpredictable and can damage any organ or tissue, from the skin or joints to the heart or kidneys.
- While lupus can strike anyone at any time, 90% of people living with lupus are women. Women of color are at especially high risk.
- Only one drug has ever been developed and approved by the US Food and Drug Administration specifically to treat the disease.
Together, we can solve the cruel mystery of lupus. Thank you for your generosity!