October 30, 2015

A Night With SK-II: Luxury Skincare and Lupus

Hosting the SK-II Pop-up in Soho
Too much sun means extreme weakness, fatigue, and oftentimes skin rashes commonly known as discoid which often appear in the shape of a butterfly across the cheekbones of ones face.

I'm one of the 40-70% of people who experience ultraviolet sensitivity from sunlight or artificial light. AS a result it left with me an endless foray of scars and hyper-pigmentation. Remember that childhood game of "connect-the dots"? Yeah, that was MY FACE! After searching high and low online for something to help me regain my confidence I came across Sheryll, a beauty blogger in Korea talking about skincare terms I'd never heard of before, essence, serums, emulsions, and so much more!
'ME' learning Asian Skincare is magical!

She talked about a luxurious Japanese skincare brand called SK-II that used a fermented yeast called pitera to rejuvenate the skin leaving it softer, smoother, and much brighter. Yes, cue Evil Disney Queen finding the perfect concoction for her nefarious plans because that's exactly how I felt stumbling over this goldmine of skincare secrets!

SK-II US Ambassador Steve Jan & I
It magic wasn't until a year later in which I met the most darling Steve Jan who is the U.S, Ambassador for SK-II. I met him during an event at Saks this past spring where we gushed endlessly about eye cream techniques and debated over whether patting vs rubbing essences was more effective. After sharing how difficult my own personal skincare journey was we came to a conclusion. How could we encourage others that were dealing with their own skincare battles after being diagnosed with lupus?

That's how "A Night of Luxury, Skincare, and Lupus with SK-II"  came to be!
Although it was a perilous rainy evening there were many dazzling faces who braved the weather with me to enjoy an awe-inspiring night where my passions of beauty and advocacy collided. Those in attendance either had lupus or knew a loved one living with it. The event was absolutely stunning! Mouth watering appetizers and manicures were followed by a innovative skincare consultation which was sort of like having Iron
Snazzy "Iron Man-esque" Skin consultation cameras
Man be your professional photographer! Plush white leather couches were nearby in case you needed to rest and everyone received a gift bag of mini SK-II products to try along with local resources to help find support while living with lupus (Thanks to the Alliance for Lupus Reseach and the Hospital for Special Surgery).

I wasn't quite sure how well the evening would be received, but once I took the stage and began to share my story I was touched by the sparkling eyes nodding in agreement whenever I mentioned how tough my lupus symptoms were.

It's not everyday that such a prestigious brand reaches out and offers to shed some beauty on an illness that can present itself in such an ugly way at times.

From the bottom of my heart I want to thank SK-II for showing each of us that it is possible to "Change Destiny". We don't have to allow that which ails us to take over our lives and change who we are inside. Cate Blanchett believes that there are many different dreams to be had at many different stages of our lives, and after fearing for the worst for so many years I've finally found
courage, love, and support in others as well as myself. The most important thing to remember is that you are not alone. 

Having a SK-II moment with Cate Blanchett
If you ever have a moment of fear...know that if you just keep pushing past it amazing things can happen!

fighting my fears,

Tiffany Marie

October 22, 2015

Pharma AND Patients?

I know what you're thinking! Pharma AND Patients? Wait, on the same team...what!?

My Patient Story via Collage at the GSK Lupus Summit

Yes, that's exactly what happened this past May during Lupus Awareness Month in Philadelphia. A group of Lupus Patients and bloggers were invited to GSK (GlaxosmithKline) headquarters to discuss how we can collaborate to help improve patient lives. You may be familiar with GSK because they are the pharmaceutical company responsible for creating the 1st Lupus treatment in over 50 years, Benlysta.
Just to clarify, GSK did not endorse me to write this post. They graciously provided transportation/lodging for me to attend the GSK Lupus Summit and the views I share with you here are 100% unbiased and my own personal opinion.
 This was the 1st time I'd ever heard of a prominent Pharmaceutical company reaching out to actual patients to learn more about the disease they are living with daily in order to learn how to NOT only humanize their brand but FILL the needs that PATIENTS deem most important.

When the process of developing new medications or vaccines takes over 15 years and well over a million dollars it's time to find a NEW approach to help those that need it most. That's where partnerships come in! I'm beyond thrilled to learn that GSK is teaming up with multiple organizations such as charities, universities, and even the government to find better solutions in health care. Besides aspiring to be a leader for lupus they are on the quest to improve the reputation of pharma. With over two dozen current clinical trials for lupus covering areas such as pregnancy and nephritis I'd say they are already well on their way. If a Pharmaceutical company is going to claim, "We want to focus on patient outcomes and NOT prescriptions!" they'd very well better have the visible data to prove it!

Info-graphic from 2011 Lupus Survey results
by Human Genome Sciences & GSK 
I must admit that when I first received the invitation to the GSK Lupus Summit my thoughts back-tracked to much darker times of shady encounters of drug representatives schmoozing the receptionist at the office of one of my old rheumatologists only to be handed endless sample packs of a medication that "can help" once I finally made it inside their office. Sadly I'm not the only one who's had a less than savory experience with pharma. I hear horrid stories all the time, so it's a nice change of pace to finally hear some good ones and even develop positive relationships that are helping to change the mindset from negative to positive.

Wondering why NOW a pharma company is reaching out to those living with lupus? Simple. The stats are in and the results show that there is a severe lack of resources for those with lupus. Patients are NOT telling their doctors OR family members how they are truly feeling which is resulting in major miscommunication between all those involved but WHY is this happening? Also simple. Many of those living with lupus have expressed that when discussing their pain or concerns with how lupus is affecting their bodies they are often met with annoyance, disbelief, and are often called lazy, crazy, or hypochondriacs sometimes by their friends, family, and shockingly in some cases their physicians. This is one of the primary reasons that those diagnosed with lupus don't like to discuss it publicly. There is so much mystery and stigma surrounding lupus because it is an illness that damages the body internally which is not always visible to the naked eye which leads many to mistakenly assume it isn't seriously debilitating or life threatening. This couldn't be farther from the truth. About two months ago both my rheumatologist and nephrologist expressed concerned and sent me for a kidney biopsy. A week after it was confirmed. Lupus is aggressively attacking my kidneys. According to the NIH about up to 60% of patients with SLE will develop Lupus Nephritis which can lead to serious health complications and yes, even death.
Photo Credit: @LupusAdventurer

There couldn't be more perfect timing than now for all aspects of healthcare to band together and put the lives of those at stake FIRST!

Did you know that the last medication to be approved by the FDA to treat lupus was Plaquenil and corticosteriods in 1955 and Aspirin in 1948?!?! Thanks to GlaxoSmithKline we now have Benlysta (Belimumab) as a major contender which was just recently approved about 4 years ago! There are still clinical trials being held for it to see if it is effective for various other patient groups such as people with African/African-American heritage and even those who are pregnant. I'm hoping that more studies will show this new treatment can be helpful for those with lupus so we can have alternative options to some of the strong medications we are currently on and lessen the harmful side-effects we experience daily.

I look forward to more opportunities to share my knowledge and experience as a patient with not only Pharma, but Physicians, Hospitals, Universities, Charities, and the list goes on. It isn't a necessity for there to be a PhD next to ones name in order to help educate or save lives. All you need is mutual respect, EMPATHY and the drive to make a difference. 

June 29, 2015

Tiffany's Back, ALRIGHT!

*tosses glitter*

Huzzah! Yes, the title of this post should be screeched at ridiculously high pitched volumes in the style of the famous Backstreet Boys song from my tween days. How have YOU been!? I've been so busy lately but I can't wait to share what I've been up to with you.

2015 has been such a great year for Lupus. Clinical trials are on the rise. Studies focusing on how Benlysta affects people of color are currently in effect so if that applies to you please speak to your doctors about participating in a clinical trial and help provide accurate research that can lead to a cure! You can find more information about this clinical trial here.

Lupus Patient Advocates at the #GSKsummit

In May I attended the 1st Lupus Summit held by Pharmaceutical company GlaxosmithKline (GSK). It was an amazing experience! I was surrounded by so many familiar faces from the online Lupus community. Shanelle Gabriel (@ShanelleG), Amanda Greene (@LaLupusLady), Sara Gorman (@DespiteLupus) and many others. Together we sat down with GSK and discussed how they can help improve the lives of the 1.5 million Americans who are affected by Lupus. I'll be sharing a full transcript of the event later this week so keep your eyes peeled for that!

Representative Daniel Donovan Jr & I at Capitol Hill in DC
This June The Lupus Foundation of America brought patients to Capitol Hill in Washington, DC to speak to their state representatives and senators about approving NIH funding for Lupus research, approving the 21st Century Cures (H.R.6), and joining the Congressional Lupus Caucus.
Representing New York City I attended meetings and spoke with Senator Charles Schumer, Senator Kirsten Gillibrand, and Representative Daniel Donovan Jr. Each of them expressed heartfelt commitment to supporting lupus advocacy and research. I look forward to connecting with my local representative Daniel Donovan Jr. since we're in the same borough of Staten Island! He was very patient and asked so many questions that I truly felt that his concern was genuine. You can see all the wonderful people who joined the LFA Advocacy Summit via YouTube here.

Being able to share my experience of living with lupus with the hope of improving patient lives globally truly drives me each and everyday as an advocate. Speaking up and showing the world what daily life is like can be scary! There will always be "trolls" who will try to judge, ridicule, and push you into a dark corner. Just remember that your voice DOES matter and each time you speak up, a lupus sister/brother feels less alone!

Are you also an advocate for Lupus? Did you raise awareness this year? Tell me how in the comments!

Glittery Hugs,
Tiffany Marie

October 23, 2014

Do You Even KAWAII? | Get Messy Art Journal: Week 3

BOOM SHAKA LAKAAAAAAAAAAAAAAAA!!!!! (In thee words of T.O.P. from Korean Phenomenon and my ultimate favorite "Boy Band" Big Bang)
Lupie Love! (Sean (right) & I (left)
I'm on week THREE of #GetMessyArtJournal and I have to say I just absolutely LOVE what the creativity it inspires in my life. Since I've met Caylee I literally GET SH!T DONE & with EXTRA glitter, can you imagine what "extra" glitter looks like in my world!? A cascading shower of endless varieties of never-ending glitter WATERFALLS! 

So I was up late one night talking to my lupus brother Sean Hodgdon, (insomniac thanks to lupus AND prednisone) and he just happens to mention that he'll be in New York City for a few hours to see a Broadway show. I heard none of the other 5 minutes of his conversation, I literally stopped breathing as soon as he said, "Oh yeah, I'll be in the city for a few hours because..."
Get Messy Crafting Supplies!

We decided to meet at Starbucks because it has free wifi, tables, and COFFEE also I love them long time for over 10+ years now. Worked there for almost four years but that's a story for another day! As soon as we snagged a cushioned table on a blustery New York City day right near thee outlets at 52nd and Eighth Avenue (unheard of I know!) Before he uttered a singe word, I leaned in super creepily close and whispered, "Let's GET MESSY! We're going to have crafting time!"

Plopped two blank and boring surgical masks and a horse-load of sparkle infested stickers on top of a Starbucks napkin lived table because GERMS and seconds later we were two magically inspired lupies having a #LupusStyle moment of KAWAII SURGICAL FACE MASK Glitterati Epic-ness! I haven't the words to tell you just how AMAZEBALLS meeting Sean for the first time after we've been chatting on every social media platform known to man for over two years. It felt like we were family, and we are! I've never let anyone tell me that "my friends in the box (computer)" aren't real. At times they are more supportive, understanding, and caring than my own blood and bones. Our friends are the family we CHOOSE. Remember that! Never discount or under-appreciate your online relationships because they transcend and do exist in REAL life.

Kawaii Surgical Masks in Progress!
(Bottom Left (Sean's Mask) & Bottom Right (My Mask)
Get Messy is a remarkable community of magical women, created by two epic GIRLBOSSES by the names of Lauren and Caylee! I'm so honored and happy to be invited into the fold of creativity. I hope you are too. Be inspired, get creative, dabble in glitter, DANCE in it! Let it consume you and take away your pain, sadness, and loneliness. Then SHARE it with us, use the tag: #GetMessyArtJournal on your social media sites. I want to see what YOU'VE created! Ready? Set? GO!


Tiffany Marie Batista Peterson