May 17, 2013

The Power of Sharing Your Personal Story

Kim Cantor
by Kimberly Cantor, Senior Director of Advocacy and Government Relations

A personal story is powerful – to those who tell it and to those who hear it. On June 24 and 25, lupus activists from across the country will meet in Washington, DC for the National Lupus Advocacy Summit, where lupus activists will unite to tell their stories to help solve the cruel mystery of lupus.

The Lupus Foundation of America’s legislative successes would not be possible without the power of lupus activists across the country who work tirelessly to make their voices heard both locally as well as on a national level. For example, their compelling and personal stories have helped:
  • Secure more than $27 million for the National Lupus Patient Registry and lupus epidemiological studies at the Center for Disease Control and Prevention (CDC);
  • Illustrate the clear impact lupus has had on those who serve in the military by keeping lupus listed as a disease area eligible for research funding under the Peer Reviewed Medicare Research Program (PRMRP) at the Department of Defense resulting in more than $12 million in lupus research to-date; and,
  • Encourage 48 bi-partisan members of the United States House of Representatives to join the first-ever Congressional Lupus Caucus led by Representatives Tom Rooney (R-FL), William Keating (D-MA), Ileana Ros-Lehtinen (R-FL), and Jim Moran (D-VA). 
  • Increase funding for health professional education, which led to the creation of The Lupus Initiative
  • Co-found the Ad Council's first national lupus awareness campaign on lupus along with U.S. Department of Health and Human Services' Office on Women’s Health (OWH)
However, there is still so much to be done. Lupus is one of the cruelest, most mysterious diseases on earth, yet research on lupus remains underfunded compared to its scope and devastation. Together, we can change this. During the first day of the Advocacy Summit, activists will receive training on basic advocacy principles and the Foundation’s legislative priorities. Day 2, activists will travel to Capitol Hill and meet with their Members of Congress to tell their lupus story, using their story to educate Congress on the Foundation’s legislative priorities, why these priorities are important to people with lupus and to raise awareness of the disease.

Sharing your story and engaging in advocacy is powerful and empowering. We encourage you to become a lupus activist and to engage with your Members of Congress through e-mails, phones call and in-district visits. Plus, there is still time to join the Foundation on June 24 and 25 for the National Lupus Advocacy Summit. Remember: just one story can and does make the difference.


Anonymous said...

My name is Gloria Lisa Howard and I reside in Kentucky. I was diagnosed with Systematic Lupus in 2007. I am a single parent and at times it can be very difficult to do what most would call a normal daily routine. I never know from day to day what my health will be like, I go from feeling okay to having a really bad day in a moment of hours. In 2010 a had a seizure, fell hit my head on a concrete floor and suffered from a severe concussion. I was in the hospital for a week and off work for a total of 4 weeks. I had to file FMLA to protect my job. I am now currently unemployed as of April 2012 due to the company closing and as to date do not have a job. I have applied for job after job, I get called for interviews and that is as far as it goes. I beginning to think my past employer is giving me a bad reference for having to be on FMLA and for missing work due to me having Lupus. I tried filing for disability but was turned down. However I still continue to apply for jobs, hoping I will get one soon and that my health does not get worse. I ask all of my friends and relatives to donate to the Lupus Foundation continuously hoping a cure will be found. To my knowledge no one on either side of my family has ever had Lupus. I appreciate the emails with the updated information about Lupus. Thank You!

Tracie R said...

Hi Kim, I shared my daughter's LUPUS story.Please check it out. The IMPACT section~ Support community be-cause it matters By:Tracie Rampley

Anonymous said...

I knew very little about Lupus. I was a Lab Tech at the time my mother was diagnosed. My mother was constantly complaining of feeling tired, her muscles and joints aching, just not feeling well. Her doctors initially diagnosed her with Fibromyalgia, but I was not convinced. I told her I felt it was something more serious. I told her to ask her doctor at her next visit if Lupus could be possible. He asked her if there was a family history, and at the time, she could not recall anyone in the family diagnosed with Lupus. Again, he dismissed it as Fybromyalgia. With this news, I was furious! I knew it was more serious. I gave my mother a list of lab tests to give to her doctor. At her follow up appointment, she gave her doctor the list and said her daughter suggested she have these run. With a smirk on his face, he asked if I was in the Medical field. When she stated yes, he told her that he would order the tests even though he felt they were very unneccessary and that her insurance will not pay for them and the cost would come out of her pocket. As I suspected, the results came back positive. Much to my satisfaction, the doctor had to eat his words and admit to my mother at her follow up appointment that he was wrong. Gasp! Yes! He admitted he was wrong and actually complimented me for my knowledge and awareness of my mother's disease, even though I was very unfamiliar with the disease, I was merely familiar with signs and symptoms of Lupus and common tests ordered through the lab which tested patients for the disease. He referred her to a Rheumatologist, and she is now in remission and has been for years. She has had some flare-ups due to stress, but has recovered quickly. Just 2 years ago, my then 16 year old niece was diagnosed with this horribly, potentially debilitating disease. Her case was more severe than my mother's, as she was already stage 4 when she was diagnosed. She suffered from severe RA, and was hospitalized several times due to her debilitating flare ups. It was so upsetting to see this young, extremely talented soccer player during these down times. She no longer suffers. The Lord took her to live in paradise February 28, 2013, where she will no longer suffer from this horrible disease! The Lupus is not what took her from us, it was a drunk driver, but we continue to support the foundation in her name. My mother continues to do very well with the continued support from her family, now that we understand what was really going on all those years ago.

Continue the fight!

saivenkateswar said...

Hi all,
I am Sai from India Chennai. My mother was diagnoised with Lupus 10 years ago. But it took doctors a long time to find out the disease. She was 45 at the time of diagnosis. She suffered terribly. even god could not see the disease and so he took her to his arms on may 6th this year as her kidneys got shut down and her skin in her back was burnt out.

My mother was employed in a bank as a cashier and she worked till the very end and told everyone that not to loose hope.
The only remedy is usage of Steroids and nothing more than that. the usage of steriods will help the patient to live upto 15-20 years.


Heather Beck said...

I was diagnosed about a week before my 18th birthday. I already had Fibromyalgia and mental illness prior to it. "Some birthday gift, huh?" I'm 24 now, turning 25 this September. Well, at first... I really let it get me down. I have Systemic Lupus Erythematosus-type, also known as SLE. Every year it seems to worsen and right now it's actually being untreated since my Mom, who was my payee for my SSDI, passed away on April 29th, 2013 of Cancer, helped me get to places since I can't drive (yet) due to photosensitivity and passing out in the Sun, or getting extremely in pain... etc. (I didn't like my doctor anyway, he says my "Lupus isn't that bad", yet he doesn't listen to me when I explain everything. Anyone else feel that way?) I'll see him when I get my SSDI in order. Falling off topic here...

But for the first couple of years, I really let it get me down... Lupus. Its potential to take my very life from me. And every year it just wants to get worse, no matter what medicine I'm on. I was already wanting to give up on my life many times before, but as they say, "someone always has it worse" - I didn't have it this bad before; I should've listened to that phrase.

In time, I struggled with my thoughts. Being trapped in my own mind for years, now my body, too. Some days I would pass out and not wake up 'til 4 days later. While other days, I couldn't sleep or lay down because I was in too much pain. All together, I couldn't do anything to "live" - you know, things you want to do. Enjoy life. Just breathing doesn't mean you're truly alive.

In time, I pushed through the pain and forced myself to stay awake. I still type and draw, despite my hands being in pain all the time and being bent in awkward angles that fingers should never look like. (My hands were what helped the Rheumatologist diagnose my Lupus.) I still do it today.

After that, I started fighting back with Lupus. As I type this, sure I'm in pain everywhere, but I don't feel like lying down and letting it take me this way. Not without a fight. Inflammations are high, but why give in? I'm building up tolerance to the pain and sometimes I don't even notice it when I distract myself. Even though, I must admit, things like the butterfly/malar rash make my face feel like it's burning - or even melting - my skin. Ouch.

I graduated from High School a couple years ago... yes, in my early 20s. I went to a digital academy since I had to miss tons of school due to my mental illness AND Lupus. But I pushed through it, and I'm still proud to say I didn't give up. I didn't think I could, since it was all typing and my hands being what they were... Well, I. Did. It.

More importantly, I'd like to thank my Mom... I learned to fight back due to her. She had mental illness and suffered a traumatic childhood. She was my only blood-relative since her family was terrible and caused a lot of her PTSD (post traumatic stress disorder, something I have as well). She had degenerative disc syndrome in her spine, as well as all kinds of back problems - like herniated discs, etc... And then she found out she had Cancer this January. She fought it with all she had. Cancer didn't take her fully, though. She was on a ventilator to help her breathe fully-she couldn't breathe on her own. I had to make the decision by myself to let them pull the plug. I think she kept fighting for me, but it just shows you can chose to let an illness take you, or wait until someone says "it's okay" to stop suffering. I love her, and she really proved to me a lot... She always told me mind over matter. I learned to endure pain and go outside because of her.

Never go down without a fight. Never.

Maribel Meza said...

I have been living with SLE (Lupus) since I was diagnosed in 1971, 42 years. Its been and is an interesting road to travel. I have been diagnosed with so many illnesses and always advised my problems were just the lupus. The key to all this is that lupus does affect everything. I have the systemic lupus. I will be 65 this year and today its about my kidneys. Getting labs, because if its a blockage than I may not need to go on dialysis. Two years ago it was my liver, was told I was a good candidate for a transplant. I've had 2 back surgeries from falls and now I struggle to walk. My story with lupus is endless. Through the years I have seen about every specialist out there, but it took me a while to realize that everything was indeed lupus related. I knew but I didnt put it together. What may help more people out there is more awareness and research. I've been blessed, my children, my siblings and extended family have been very supportive. Its helped me to have hope and faith. Even through all the depression, times I've crawled, etc., I have to sum the past 42 years by saying my life has been fruitful. I did not get the liver transplant and I pray I won't need the dialysis. I have been proactive in my own care, doing research, watching my diet, exercise not so easy for me, taking supplements (with doctor approval. I check in with all my doctors for periodic labs. I am off all meds except for a water pill, and supplements. I tolerate alot of the aches and pains, unless its severe I mostly live with my lupus. We've been together this long so I accept that. Just live as stress free as possible and do what is necessary to keep moving, even though it might be hobbling. I do have a beautiful sister a few years younger who has lived with lupus for 20 years or more. But she too keeps an open mind and has faith God has a plan for us. While my lupus is more related to my organs, hers is more arthritic, so we encourage each other. As far as my parents, they were tested when I was first diagnosed, and they did not have it. My personal opinion is that like so many illnesses, it may be stress related. We did live a very stressful childood. At any rate, we have moved past all that and look forward always to a better tomorrow.