March Awareness Month

March is the month of awareness for endometriosis, autoimmune diseases, and colorectal cancer.  I’ve written and rewritten this post in the notes on my phone a few times.  All three of these things are very important to me, so I wanted to make sure I got it right.  I am affected by two of them, and the other is something for which I am at a higher risk.  Between my flare this month and a little, good old-fashion procrastination, I unfortunately missed the deadline I set of completing this post in March.  I hope this post can still help explain why awareness is still important – even in April!

Ever since a young age, I have had horrible abdominal pain since I was pre-menarche and equally bad cramps and heavy periods since.  During a hospital stay for my ulcerative colitis, they found what looked like a cyst on my left ovary during a CT scan and scheduled a pelvic ultrasound to get a better look.  It was discovered that I had not only a cystic ovary, but what looked to be endometriosis.  There isn’t nearly enough research done on endometriosis and there is so much more that needs to be discovered.  My gynecologist and I decided surgery for both would be the best option.  Unfortunately, my surgery needed to be rescheduled twice due to ulcerative colitis flares.  Finally, on Christmas break of my final year in college we were all set to remove the cyst and any endometriosis that we could.  The game plan was to try and save the ovary and just remove the cyst, only to learn that the entire mass was a cystic.  My gynecologist wondered if there ever was truly and ovary or just a cyst.  She also found that the endometriosis was binding part of my colon to my uterus, but was able to laser the endometriosis off.  It was a laparoscopy surgery done with the da Vinci machine, so though I have five scars, they are all small and three have faded well.  Since surgery, I’ve had far less cramping and pain due to endometriosis, and I haven’t had a notable reoccurrence.

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My oophorectomy scars 4 years after surgery

Autoimmune disease is also something that is very important to me, and thus, so is spreading awareness.  I personally am diagnosed with Inflammatory Bowel Disease, Endometriosis, Celiac disease, and had drug-induced Lupus from Remicade treatments, but believe that spreading awareness for all autoimmune diseases is important.  Though there are studies done, there is so much more that is still unknown with autoimmune diseases.  Many people need to see multiple specialists before being diagnosed or set up with a treatment plan right for them.  Awareness leads to the spread of knowledge and drive for research funding which leads to better treatment options and hopefully – one day – cures.  American Autoimmune Related Disease Association is a national non-profit that is focused on research, advocacy, and providing patient resources for all autoimmune diseases (and is actually located local to me in Michigan!)  They have great resources on diagnosis tips and having conversations with your doctor(s), as well as studies on the connection between women & autoimmunity.  Great discoveries are fueled by funding and knowledge gained from advocacy and awareness of autoimmune diseases, so speak up and tell your story!

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Baby Lauren deep in autoimmune research

March is also national colorectal cancer awareness month.  Though most IBD patients won’t develop colorectal cancer, the risks are higher for us than those without IBD.  It is recommended that people with Crohn’s disease or ulcerative colitis receive a screening colonoscopy once they’ve had the disease for eight to ten years – especially if there is a family history of colorectal cancer.  My maternal great-grandma died of colon cancer when I was young, so I am extra diligent and so is my GI team.  I had my first cancer screening colonoscopy in January of this year, and sixteen biopsies were taken, including the removal of one polyp.  I am happy to report that I am in the clear!  These screenings are very important, especially as someone with IBD, and colorectal cancer is treatable when found early.

All three of these diseases are near and dear to my heart, as they affect myself and those I care about.  Even though it’s April, it’s never too late to keep spreading awareness of our stories!

The Great Bowel Movement

There is another non-profit I wanted to highlight that is very close to my heart – The Great Bowel Movement.  It is an IBD and ostomy focused non-profit focused on empowering patients to start conversations and educate others.

The Great Bowel Movement was founded by Megan Starshak & Andrea Meyer in 2010.  Both women have Inflammatory Bowel Disease, ulcerative colitis and Crohn’s disease (respectively), and met at Camp Oasis – a summer camp program established by the Crohn’s & Colitis Foundation.  After establishing a bond and becoming friends, they created GBM, which is run by volunteers, a collection of patients and caregivers, who are equally as passionate about this movement.

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The organization started with the shirts – Andrea’s idea and Megan’s design – as a way to start conversations, empower patients, and make an invisible illness visible.  When people ask about the shirt, an opportunity is presented to share your story of how IBD affects you – it’s a tool to increase awareness.  As I mentioned in “Changing the Conversation,” my “Ask Me About My Colitis” shirt was a great resource in helping me educate my co-workers on one of my chronic illnesses and why I was taking the extra precaution of wearing my Vogmask.  With my first shirt order, I also received two pins, a bathroom card, a “Mad Libs” style IBD elevator pitch, and information for caregivers.  I wear the two pins on my coat, which have also started conversations and education.

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They also publish articles and provide resources and tools to patients and caregivers.  Though their website is in the process of being redesigned, they will be bringing back the content and resources along with new posts when they launch!  One of the new posts is a guest blog I wrote about going through the job search and interview process as someone with a chronic illness and deciphering your benefits package – a piece I’m very excited for you to read!

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As they say on their website, “We all have stories that matter.”  This is one of the things I love most about GBM – they foster a community where we can feel comfortable sharing our stories and experiences with each other and educating those who have not yet heard of IBD.

Fund A Life

Today, I want to talk about a non-profit that, though I only recently became aware of, I am deeply passionate about them and their cause.  I first learned of it through a coworker who is the sister-in-law of the founder, Mark Howell.  In October 2012, he was diagnosed with Stage 4 Metastatic Melanoma.  Mark’s community raised hundreds of thousands of dollars to help him and his family cover medical costs.  Because of these neighbors, he was able to travel around the United States and get the care he needed to help beat cancer.  Mark wanted to give the same opportunity to others going through catastrophic life events.  In 2015, as a cancer survivor, he established the Fund A Life Foundation to support this effort.  They do constant fundraising so funds can always be available for those in need, instead of fundraising on an as needed basis.  As of now, Fund A Life focuses on the Michigan community, but has a vision to expand their outreach across the country.

Another one of our coworkers in no stranger to chronic illnesses.  His amazing wife has been battling multiple heath issues for years, only recently getting a diagnosis – Long QT Syndrome.  Many of her treatments aren’t covered by insurance, so hospital bills have been piling up.  She is one of the most giving, caring people I’ve crossed paths with – even when enduring tough times of her own.  She has helped family members get the proper resources when overcoming addiction and has saved dogs from abusive homes.  She has also volunteered her time to create a fundraising event for SADS (Sudden Arrhythmia Death Syndromes), a wonderful resource for people with heart disorders.

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Once Fund A Life became aware of their story, the began putting the plan in place to help and set up a surprise reveal of their grant approval.  I was brought into the surprise-planning process to help ensure he would be in the office.  I scheduled a fake meeting so he would be in our HR office – a more secluded area.  A few moments after he arrived, Mark walked into our office with a Publisher’s Clearing House sized check.  The recipient was truly surprised and very grateful.  He shared an update of their most recent medical battles and that his wife has been feeling anxious about the bills they owe.  I am also grateful to Fund A Life for providing an opportunity for this family to pay off medical bills and help in the recovery process.  It was a very special moment that I feel honored to witness.  Our company’s motion graphics team also caught the reveal and is putting together a video for the Fund A Life website, so you can share in witnessing the moment once the video is posted.

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I have reached out to Mark, because Fund A Life is a foundation which I would love to be involved.  If this non-profit could help you in your health journey or it’s a cause you want to help with, follow this link to learn more:  http://www.fundalife.org.