14 posts in the category “lupus”

Member Christine’s Instagram takeover for World Lupus Day

Posted May 11th, 2018 by

In case you missed it or you’re not on Instagram, on World Lupus Day (May 10), PatientsLikeMe member Christine took over our Instagram to share her experiences and help raise awareness of lupus (May is Lupus Awareness Month). Christine is a native Californian, a social butterfly, an advocate and a member of our 2018 Team of Advisors (check out a quick video about her here!)

Hi! My name is Christine and I am a lupus patient. One of my goals is to help spread awareness and educate others, so today I’ll be sharing key moments in my life with lupus and lessons I’ve learned along the way.

Did you know that 1 in 4 lupus patients lives with a comorbidity (multiple chronic illnesses occurring at once)? In addition to lupus, I’ve been diagnosed with 34 other conditions. My case is complicated and severe, and while I know that there is not much that can be done for me, I hope that my experiences can lead to a better understanding of lupus and will inspire others to speak up, take action and find a cure.

“You make a living by what you get. You make a life by what you give.” —Winston Churchill

Finding the right treatment for lupus can be difficult. Most patients, myself included, will try a number of different medications in order to achieve remission. These medications, while they may help, can also have very toxic side effects. In fact, some of the side effects can be worse than the disease itself. I have had three drugs that have caused significant damage to my body. I now have hydroxychloroquine retinopathy, avascular necrosis and toxic encephalopathy as a result. Though scary, it is a reality for so many patients.

Despite the setbacks, the experience has taught me how important it is to advocate for yourself. As a patient, it’s your duty and your right to do your research. If you are uncomfortable with a drug or the side effects are too severe, make sure to speak with your doctor. Remember, no one knows your body better than you do.

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.” —Maya Angelou

Dealing with an illness isn’t easy, and going through it alone can make things even more difficult. Support is one of the most important aspects of dealing with any disease, including lupus. While family and friends can be a crucial part of your support system, I’ve found that it helps to seek advice from others not involved in your immediate circle.

Many people frown upon support groups as a place where people go to complain and commiserate, but most support groups are nothing like that. Finding other patients to connect with is an amazing experience. To be able to talk to someone who knows exactly what you’re going through makes all the difference in the world.

My support group is not just a support group — they are my confidants, my motivation, my inspiration and, most importantly, my friends. Regardless of your condition, I’d encourage you to reach out to other patients, both online and in person. There is so much that can be learned and shared among us.

“Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you.” —Misty Copeland

With beauty playing such a pivotal role in our society, women are often criticized for changes in their appearance. About 90% of lupus patients are women, which makes dealing with the disease even more difficult since lupus can wreak havoc on both the body and mind.

The photos above were taken only one year apart and that adorable little girl is now a teenager. I had been on high-dose steroids and put on 70 pounds within the first month. I was unrecognizable and my self-esteem gone. At my heaviest, I weighed in at 220 pounds, all due to medication.

It’s not easy to go through the physical changes of the disease, but I’ve always found the light at the end of the tunnel. Looking back, I wish I had taken more pictures during that time. I missed out on so many memories because I couldn’t stand the way I looked. It took a while but I’ve learned to embrace myself, regardless of my weight.

“Beauty begins the moment you decide to be yourself.” —Coco Chanel

Recently, a friend of mine from high school passed away. My heart breaks for his family and wife. His death has brought to light the question of our mortality. As someone with a serious chronic illness, I have been told more times than not that my chances of survival are slim and I’ve even had my last rites read to me.

The thought of death is often far more real for those of us with chronic conditions. It looms in your mind and forces you to question the things in life that you thought were once so important. It’s a valid fear and a harsh reality, often dismissed by others. My post is not meant to be depressing, but rather to encourage you to live your life to the fullest, be happy and help others. With that, I’ll leave you with a final quote. Thanks for following along!

“Twenty years from now you will be more disappointed by the things that you didn’t do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.” —Mark Twain

Join PatientsLikeMe today to connect with Christine and thousands of others living with lupus.

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Health news: What’s making headlines this month

Posted May 8th, 2018 by

Let’s stay on top of the latest health news — in case you missed it, check out this round up of some of the stories making headlines in May.

ALS
  • May is ALS awareness month: Later this month, advocates from across the U.S. will head to Capitol Hill to meet with their legislators. Check out how you can get involved and join the fight against ALS.
  • Congress passes $3 billion increase in NIH funding: $140 million of the increase will go to the BRAIN Initiative research projects that contribute to the knowledge and understanding of ALS. More info.
Lupus
  • May is Lupus Awareness Month: Nearly two-thirds of people know little or nothing about lupus beyond the name, according to the Lupus Foundation of America, which is promoting the “Go Purple” campaign. Get ideas for boosting awareness.

  • A link between the “mono” virus and lupus? A new study published in Nature Genetics shows that the Epstein-Barr virus (EBV) — known for causing mononucleosis — may increase the risk of lupus and six other autoimmune diseases by changing how some genes are expressed. Check it out.
Parkinson’s Disease
  • “Suspect” Parkinson’s drug faces scrutiny: Following reports of hundreds of deaths and adverse events, the FDA is re-examining the safety of Nuplazid (pimavanserin), which was approved in 2016 for treating hallucinations and delusions associated with PD. Read more.
Lung cancer
  • Emerging treatments for small-cell lung cancer (SCLC): Immunotherapy and other emerging drugs called PARP inhibitors and Rova-T(Rovalpituzumab tesirine) are among a group of new therapies showing “early promise” in clinical trials for the treatment of patients with SCLC. Hear from one patient.
MS
  • Life after a stem cell transplant: The BBC’s Caroline Wyatt had a stem cell transplant in Mexico to reboot her immune system. A year later, she shares how she’s doing. Read Caroline’s story.
  • New drug for secondary progressive MS: Phase 3 clinical trial results show that a new drug could slow down the progression of symptoms for people living with secondary progressive MS. Get the scoop.
Mental health
  • Ever heard of forest bathing? Research from the Nippon Medical School in Tokyo found that just standing in the woods could reduce depression scores and improve immune function. They also found some surprising benefits of dirt… Get the full story.
  • Looking closer at medical marijuana strains and doses: A new study draws from user-reported data on marijuana smoking habits to understand the effect of weed on depression and anxiety. From different strains to number of “puffs,” see what was uncovered.
  • Combining treatments for better results: Researchers at the University of Texas found they could boost the positive effects of cognitive processing therapy (CPT) by adding transcranial magnetic stimulation. More info.

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