Notable News May 2019

Moving into summertime, for many, means increased sun exposure, so it’s pretty good timing that May, the gateway month to summer, is Skin Cancer Awareness Month. Prevention guidelines can be found at skincancer.org and include staying in the shade, avoiding tanning, and protecting your skin with clothing and sunscreen. More guidelines and tips can be found here. However, as noted in washingtonpost.com, prevention guidelines aren’t exactly universal. It turns out that sunscreen is not effective in preventing melanoma in darker-skinned people. While melanoma is a risk for all skin types, those with dark skin or of African descent, usually develop melanoma known as acral lentiginous melanomas which develops in parts of the body that don’t get much sun exposure, such as the palms of the hands or the soles of the feet. Of course, sunscreen use is still recommended for people with all skin types to prevent other sun-related damage, and it’s important to talk to your skincare professional about whether or not sunscreen is the best prevention option for you. Find out more here.

Summertime also tends to include barbecues and picnics, but you might want to think twice about what food you’re packing for the potluck, according to a new study reported in livescience.com. The study researchers estimated that more than 80,000 U.S. cancer cases diagnosed each year might be related to an unhealthy diet. The diets known to be related to cancer risk are low in whole grains, dairy, fruits, and vegetables, and high in processed meats, red meats, and sugary drinks. The cancers most closely-related to diet were colorectal, cancers of the mouth, pharynx and larynx, uterine cancer, and postmenopausal breast cancer. Adults ages 45 to 64 had the highest rate of diet-related cancer. More information about the study can be found here.

There is also increasing evidence that diet can help with cancer treatment, says theatlantic.com. Doctors are starting to look at how the food we eat could affect the cancer cells in our bodies and how what we eat may assist in treatment or preventing cancer cells from growing. Of course, because cancer is a very varied disease, there is no one diet that is best. Different nutrients, or the absence of them, affect different cancers in different ways. The promise is that doctors are starting to uncover the relationship between foods and cancers and how we can best utilize our diets for good health. More information can be found here.

In addition, straitstimes.com further explores the relationship with food and cancer. Researchers in Singapore found a link between a nutrient known as methionine, often in meat, fish and dairy products, and cancer. They discovered that cancer stem cells use methionine as fuel, but when they “starved” lung cancer cells of methionine for 48 hours, they saw a 94 percent reduction in the size of the tumors. The information is promising for the future of cancer treatment. More information can be found here.

No matter what is in your picnic basket or what kind of sunscreen you use, you can enjoy your summer with the knowledge that you are doing your part in being a hero in your own story — much like a young super hero named Wyatt who, during his fourth round of chemo, learned that his dreams would come true in a music video that involved fast cars, battling the bad guys, and pizza. It’s a feel-good story that feels just right for summer. You can read all about Wyatt here. It’s guaranteed to put a smile on your face as bright as the summer sun.

Patient Advocacy: How to Create a Visually Compelling Message

Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change. An effective advocacy message is credible, clear and convincing.  When it comes to creating content to support your message, the type of content you create matters.

In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand and retain information more quickly. Furthermore, in an increasingly crowded social media landscape, images can break through the online clutter so more people can find your message.

6 reasons why visual content is effective at getting your message across

  1. People are drawn to images. Eye-tracking studies show people spend longer looking at images on a website than reading text.
  2. People connect more emotionally with images than text.
  3. Our brains process images faster – up to 60,000 times faster than text.
  4. We remember pictures better than any other stimuli. According to neuroscientist, John Medina, we will remember 10 percent of information three days later. But if we add a picture recall goes up to 65 percent.
  5. Images are a universal language. They can be understood regardless of language differences.
  6. Images are shared more often than text only posts. Visual content is more than 40X more likely to get shared on social media than other types of content according to research by Buffer.

How to create your own eye-catching visuals

It used to be the case that to create graphics you had to have graphic design skills, but now any one of us can design eye-catching images using a variety of free and easy-to use apps and online tools.   Below you’ll find listed some of my favorite sites which I use to create professional looking graphics – without spending a cent.

  1. Canva is one of my every-day go-to tools when I am creating visuals. Whether you want to create a Twitter post or Facebook header image, you can do so quickly using Canva’s drag and drop editor. Select from a number of pre-set designs or create something from scratch. It has a multitude of layout options, fonts, images and illustrations to choose from.  You can also add elements such as custom icons, fonts, charts, and illustrations.
  2. Quotes Cover turns quotes or short text into images for social media. You can also use it to create high-resolution images for posters or other print design. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color.
  3. Stencil is a super quick and easy way to create graphics. It gives you access to 860,000+ background images. You can add whatever text and/or graphics you’d like to these and directly share them on social media. If you like sharing quotes on social media you can take advantage of their ready to add quotes feature.
  4. Easil is an online graphic design tool with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories.
  5. Infographics are a great way to present your data in a creative and visually appealing way (see this infographic created by metastatic breast cancer advocate, Jo Taylor, to raise awareness of the signs of secondary breast cancer). To create your own infographics, use a tool like am.
  6. Use Screencastify to create screenshots. This is one of the easiest ways to create images to simply and clearly explain a concept. I also use Snagit and Awesome Screenshot to create my screenshots.
  7. Social Media Resizer is a useful tool to optimize your images for each of the social media sites you are sharing on.  If you don’t size your images correctly for each social network, people won’t be able to see or read them clearly.

Where to find the best images for your graphics

I’m sure you already know that you can’t simply use pictures that appear on Google’s image search. Instead, you need to use a site that provides images licensed as “Creative Commons” — this means the pictures are completely free to be used for personal purposes. The following list of image sites are all great sources of Creative Commons (CC) images.

  1. Flickr is a popular photo sharing platform that allows users to store, sort, search, and share their photos online. It includes a section for photos that have been shared with a Creative Commons license.
  2. FreePik offers users, high quality graphic designs and illustrations. It operates on a freemium business model which means, the majority of the resources offered at Freepik can be used for free, only having to credit the author of the illustration to Freepik.
  3. Pexels provides over 3,800 high resolution photos, collated from other free image sites — making it one of the largest free image directories. Pexels has also added a large library of stock videos to its site also under the CC license.
  4. Pixabay hosts over 650,000 free stock photos, vectors, and art illustrations free of copyrights under Creative Commons. The site also has a collection of stock videos. On the home page, you’ll find a small, curated collection of images and a search bar for more targeted results.
  5. Unsplash gives you access to a bank of 50,000+ free-to-use photos. You can subscribe to receive ten new images every ten days directly into your inbox.
  6. The New York Public Library This site is a living database with new materials added every day, featuring prints, photographs, maps, manuscripts, streaming video, and more.

With so many tools out there, there is no excuse for poor-quality visuals.  Whether it’s a Facebook cover photo, a blog image, or an infographic, there are tools for every skill level. Experiment to find which tools work for you and use them to add more visual appeal to your social media campaigns.

A Journey of Resilience

Nothing in life can ever prepare you for the news of a life changing illness of any type. This was the case in 2006 when I was diagnosed with Complex Regional Pain Syndrome or CRPS for short. A rare neuro-autoimmune disease that causes constant chronic pain and can also affect the immune system, skin, muscle, joints, and bones it is known as the most painful chronic pain condition there is. The other name of which people refer to CRPS is “the suicide disease”, for which no explanation is really needed.

I live in Regina, Saskatchewan. If you don’t know where that is that’s in Canada. As a happily married father of two very special girls, family life was everything and more leading up to diagnosis. I held a position in senior management with a large company and my wife had decided to leave nursing to pursue her desire of being a stay at home mom. Life was good! Then our world was suddenly flipped upside down as a simple surgery to remove a cyst in my left wrist went really wrong.  Immediately after the surgery I started experiencing a burning in the arm. Not to mention the severe pain and swelling that was going on. Something was very wrong and the pain getting more unbearable by the day.

This would set off almost an almost two year journey into trying to figure out what was causing such horrific pain. I also began to display numerous other symptoms associated with CRPS. Symptoms like sensitivity to touch and temperature, waxiness of the skin, hair loss, and disfigurement to name a few.  Eventually, I would visit upwards of twenty physicians being tested for every disease you could think of. Yet no physician was able to make any form of a diagnosis. Without answers trying to treat this disease was difficult. Eventually, I was unable to use my hand at all, and the pain left me unable to function on most days. So I would be forced to go on permanent disability.

After virtually exhausting all the resources within Saskatchewan I would have to seek help outside the province. With paperwork already filed with the Mayo Clinic and preparations being made to go, we received a phone call from a friend who is a physician and knew of a specialist who specialized in chronic pain. We flew out to Vancouver, B.C. where the specialist was able to make the diagnosis of CRPS and tell me there was no cure, and that there was very little he could do to treat me.  As I walked out of his office I remember being hit by a wave of emotions!  Suddenly everything was becoming so real. Things like fear and anger were trying to take over my mind. I didn’t know what to feel or where to turn next.

As if this wasn’t enough, after an injury to my ankle CRPS spread into my left ankle and leg. This would eventually mean that I would need to use a cane to walk at all. To say the journey up until this point was frustrating is an understatement! Not wanting to focus on the negative however I remained optimistic in my pursuit to find the help I needed. Through a series of tests that I would have in order to try and manage the pain in my leg, I would finally find a specialist who could help with a treatment plan.

It had been almost two years up until this point but I finally felt as if there was a little bit of hope that something could be done to help me manage this disease. I had finally been referred to a neurologist who works with a small team of professionals who worked with CRPS patients. This is the part of my story that I get so frustrated with because we had gone full circle only to end up right back here in Regina. Had other physicians or specialists been more aware of CRPS then quick diagnosis could have happened.

It was refreshing finally having a team of healthcare professionals who truly understood what I was living with. The goal was to try and help me gain back a quality of life I had lost and maybe more. So over the course of the next several months I would form my treatment plan which was to be a combination of medications and surgically implanted neuro-stimulators.  After ten major surgeries and extensive physiotherapy I started walking short distances. I also started working with a psychologist to try and help with aspects of my mental health that I was struggling with. These were both positive steps and gave me the motivation I needed to keep moving forward.

As I started coming to terms with everything I was going through with this disease I began to see that I didn’t have to let it hold me hostage. Sure, things might be good one day and bad the next but I could chose to be positive and move forward to the best of my abilities. I had to ask myself a really hard question. Was I going to let CRPS define who I am or what I can do with my life? There was still so much about my life that was so good! I was just having trouble seeing that through all the emotions. Once I figured all of that out, it made moving forward so much easier. It was at this point that I decided to start using my story to help others and to advocate and raise awareness.

There are so few resources available to those of us struggling to find diagnosis, treatment, or even support programs with a rare disease like CRPS. So in the middle of the night I wrote a letter to our Premiere outlining my story, similar to the one here asking him to declare Nov 2 CRPS Awareness Day in the Province of Saskatchewan. The goal of this was just to do my little part here in my part of the world. Before long this was in place and I now have a yearly event taking place. Right here in my city we have had Feb 28 declared Rare Disease Day, and I have started a Peer2Peer support group through the Rare Disease Foundation. I speak at, and attend conferences across Canada and the U.S. in order to try and raise awareness and create change. Those efforts are making a difference because here in Saskatchewan with the efforts of CRPS Awareness Day we have managed to see changes in the teaching curriculum for second year med students.

Trying to fit thirteen years into what I’m writing today isn’t easy because it would take a book to try and explain all the different ways that chronic illness affects an individual’s life. My story that I’ve outlined here for you today, really only touches the tip of the iceberg when it comes to what my family and I have had to endure. However, I’m choosing to see only positive and the things that bring me hope in my particular journey. Things like the levels of awareness that have been raised within my community and province. Or the personal friendships and support from different communities that I have gained along the way. I can’t say what will happen down the road but there are a lot of things that are in our control. What choices will you make?

10 Tips for Mental Health Spring Cleaning

Every spring, we give our homes a deep cleaning to get it ready for the coming year. Do you do the same to your mind? Decluttering your brain is just as important as organizing your home. Here are 10 tips for mental health spring cleaning.

1. Start Journaling

Journaling might be a hobby that has fallen a bit out of vogue, but that doesn’t mean it’s any less effective. Keep a journal of your thoughts, worries, fears, and upsets. This helps release them from your mind.

2. Drop a Bad Habit

Pick an area in your life that has an impact on your mental health. For many of us, this might be diet or exercise. Make an effort to drop the habit and replace it with a healthier option. Instead of lazy Sundays, for example, maybe switch to lazy Sunday afternoons after a quick jog.

3. Let Go of Past Drama

Drama, and the negative feelings it induces, has a way of sticking with us. Let past drama go, even if it’s tempting to hang onto it. Your mind will be a more positive space and will be better able to handle the coming year thanks to your effort, and you’ll feel less stress and anxiety as a result.

4. Tackle Projects You’ve Been Putting Off

We all have a mental list of projects we really need to tackle. Start your “mental health spring cleaning” by writing down all of the things that you’ve been putting off, like home repairs or going to the skin doctor, and making the necessary appointments to get everything in hand.

5. Build Positive Relationships

We all have people in our lives that we love, but with whom we don’t have the healthiest or most enjoyable relationships. Instead of spending time prioritizing those people, consider dedicating your time to positive friendships instead.

6. Begin Healing Past Trauma

Life doesn’t leave anyone unscathed, and you might have some experiences in your past that have negatively affected you. If you haven’t already, now is the time to start taking steps towards overcoming them. Don’t be afraid to reach out to professionals for advice and guidance.

7. Make Gratitude a Priority

One great way to promote a healthy mind is to take some time to consider everything for which you are grateful. You can do this in a number of ways. If you’d like to make a daily list, for example, then set aside some time to the activity every day. You can also take a few moments every day and mentally check off all of your blessings.

8. Kick Negative Thoughts to the Curb

Chances are good you have enough on your mind without negative thoughts bouncing around. Consciously push those thoughts out and refocus on something positive instead.

9. Pick Up a New Hobby

Consider starting a new hobby to help spend your time constructively. A mind occupied with an interesting activity is a happy one.

10. Change Your Perspective

Accept that you’re not perfect and neither is the world around you. Instead of focusing on issues that make you made, look to the moments of progress and joy instead.

Are you ready to get started on your mental health spring cleaning? Take a look at some of our tips above and get started!

Peer to Peer Health Networks, Trust … and Facebook

Unless you’ve been visiting another planet lately, you’ve probably seen a headline or two (or maybe fifty) about the rising sense that the social network called Facebook might not be trustworthy when it comes to data privacy for the network’s users. Not that the barrage of headlines over the last year have been the first time the company has had to go into crisis communications mode over data privacy issues – there was a dustup over user privacy that led to a US Federal Trade Commission (FTC) consent decree in 2011, which Facebook has apparently ignored in the ensuing eight years – but the current contretemps over betraying user privacy makes the 2011 headlines look like a radar blip.

The impact on Facebook patient communities, who have made extensive use of the Facebook Groups product to gather together to provide support and resources for people dealing with conditions from ALS to rare disease to hereditary cancer risk, is only just starting to break through the noise over the Cambridge Analytica story, which was how the privacy leaks on the platform were first discovered. The ongoing saga of “did the Russians hack the 2016 election,” with Facebook’s likely, if (maybe) unwitting, part in that, adds to the thundering chorus of “what the heck, Zuckerberg” that’s echoing across the globe.

Peer to peer health advice has become part of any person-who-finds-themselves-a-patient’s self-advocacy routine – just ask internet geologist Susannah Fox, who has made a successful career out of observing what people do with the information access bonanza known as “The Internet.” Facebook has become the go-to platform where people gather to discuss their health issues, usually in Closed or Secret Groups, where all kinds of deeply personal and intimate details of their lives, and health conditions, get shared. Discovering that those personal, intimate details had basically been released into the wilds of the web, willy-nilly, with no way to track where that data wound up, has rocked communities around the world who relied on Facebook to provide the connections they’ve come to depend on to manage their health conditions.

In the slow-motion train wreck that the reveal of this data leakage/breach has been, cybersecurity researchers Andrea Downing and Fred Trotter get a lot of credit for digging into the Facebook API to figure out how a Closed Group could become a data-slurping bonanza for any jackass on the internet. Trotter and health-tech legal eagle David Harlow filed a complaint with the FTC, co-signed by Downing and bioinformatics guru Matt Might, spelling out exactly how Facebook had played fast and loose with their Terms of Service for the product, and also allowing their Developer platform to become a data-miner’s paradise with a “there are no rules, really” accountability framework when it came to data snagging.

Since discovering the security vulnerability in 2018, reporting it to Facebook, getting what amounted to a “so what?” response from the platform, and then trying to figure out how to keep community members’ data safe, Andrea Downing, along with Fred Trotter, David Harlow and, full disclosure, yours truly, along with a host of other patient activists, have formed a collective to figure out how to create a community platform for patient communities *off* of Facebook. Stay tuned for updates, that’s going to be a big job, and it’s going to take time and some serious deep thinking and heavy lifting.

In a piece on the Tincture health channel on Medium, “Our Cancer Support Group On Facebook Is Trapped,” Andrea spells out the issue clearly, emphasizing that the promise of connected community that Facebook offered exists nowhere else … yet. And until it does, patient communities are indeed trapped on the network, since that’s still where they get and give the support so deeply needed by people who get a diagnosis, and who want to find out from someone who’s been there, done that, what their own future might hold.

It’s not an easy-to-solve problem, this betrayal of trust that creates a pressing need for the creation of a safe harbor. I’m putting it before you on the Patient Empowerment Network since I know that everyone who reads the pieces posted here has a stake in peer to peer health, and the trust framework that’s required for peer health resources to be effective. If trust is the new network effect, it’s incumbent on those of us who advocate for robust online peer interaction in health, and healthcare, to call for more trustworthy platforms to support our work.

Let’s get on that.

Spotlight On Monica Weldon – A Rare Disease Advocate

The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights and practical tools for living their best lives with rare diseases, with tracks for newly diagnosed patients, long-term patients, caregivers, physicians and medical students. Download the full agenda now for a look at the sessions, speakers, events and fun that will make this weekend in Houston one to remember.

In addition to workshops, programs include a Texas BBQ, wellness room with yoga and the hottest ticket in town: access to “NASA’s Museum” aka Space Center Houston, where we are hosting the year’s biggest show! Every registration comes with complimentary entry to the 2019 Rare Impact Awards, celebrating individuals, groups and companies making great strides to improve the lives of people living with rare diseases.

Monica Weldon is a caregiver for her young son, who is living with a rare disease. She will be speaking on “Relationships: Managing Marriage, Raising a Rare Child, Caring for the Other Children” as part of the Loving Rare track, which focuses on education and coping advice for caregivers. Here is an interview with Monica.

Please tell us about yourself and why you’ve founded the Bridge the Gap – SYNGAP – Education and Research Foundation?

When Beckett was 4 months old, I noticed he was not meeting the same milestones as his twin sister. This then began a journey to find answers to help my son. I started to blog about his progress and this led to building a community of parents and caregivers that are now a strong support group. I am the Founder and President/CEO of Bridge the Gap – SYNGAP Education and Research Foundation. My passion to help support these families by raising awareness and creating a strong foundation that will accelerate a path to better therapies.

I retired in 2016 after 23 years in education teaching secondary science. My new focus is on building the programs and mission of Bridge the Gap – SYNGAP Education and Research Foundation. I am the Primary Investigator on the SYNGAP1 (MRD5) Registry and Natural History Study. I am a life member of the Worldwide Association of Female Professionals and a member of the first class of 2017 Illumina Ambassadors established in the United States. In addition to leading the foundation, I am an author, public speaker, consultant on rare disease business strategies and advocates for rare disease legislation at both the federal and state levels. Several of my authored scientific publications include Nature Neuroscience, The Journal of Neurodevelopmental Disorders, and The Journal of Pediatrics. I have authored a book about my son Beckett’s diagnostic journey called “Slow Moving Stream – My Special Boy”. I graduated from East Texas Baptist University with a Bachelor’s of Science in Biology/Psychology (1991) and Secondary Certification in Education (1995). I am married to Chris Weldon and have five beautiful children, Haleigh (26), Taylor, USMC (23), Sawyer (21), and the twins Beckett & Pyper (10).

What specific challenges have you faced when advocating for your child? How did you overcome these?

One of the biggest problems I have faced is trying to obtain getting needed services for my son at the State level in public school and through Medicaid waiver programs.  The education system is strained with lack of resources and under staffed to get the needed quantity of therapy that is required to keep him progressing at a constant rate.  The state programs which allow him to have many of his medical needs taken care of are depleted due to lack of funding in our state.  We have considered moving to another state to obtain the services that he so desperately needs. Respite care is essential.

What are some resources available to help families better manage their family relationships while being impacted by a rare disease?

If you are a person of faith, lean on your church.  There are many special needs programs for couples and siblings of those with special needs.  Find camps that will include both the child of special needs and typical siblings.   If couples are having problems, seek counseling.  If finances are problems, negotiate with the counseling group to see if there are sliding scales they use to charge either low rates or none at all. They all have them.  Everything is negotiable.

What can parents do to feel less overwhelmed by a rare disease diagnosis?

I believe that grieving the loss of a child you thought you would have is a must.  Counseling can help and also spending time away from the situation to work on the relationship can be beneficial.  The question becomes how?  Especially if you are financially strapped and may not have family or friends to help relieve and remove you form the stress of caring for a special needs child.   Working  out and taking time for yourself is incredibly important.  People should not feel bad for taking an active role in self care.  It is a MUST!  if you don’t you lose yourself.

How can parents help their child living with a rare disease feel less isolated from the children who don’t have a rare disease?

I think that families should include them where ever possible and treat them as regular people.  After all, they are.  People seem to forget that just because they have a rare disease or disabled from one they do not feel, think or understand what is going on around them.  They do and it’s just as important as if hey were not sick or disabled.

What are your tips for other parents who have children newly diagnosed with a rare disease?

Find a community like you! If you don’t have a community, then do not be scared to begin one. There are other people out there like you.  Give them the opportunity to find YOU!  This will make a world of difference in such a world already predisposed to isolation.  Once you find a community, scour the world for experts.. if they’re none, find those who have related field in the symptoms of your disease.  There will be someone eventually who will want to help.  Never stop asking for help.

What do you wish everyone knew about families impacted by a rare disease?

It is HARD.. the days are Hard and long, but then days are triumphant and joyful.  This life is easy to take for granted, but the circumstances also teach you not to sweat the small stuff.  You really learn what is important in life.  Choose your battles.  Think about the things that are hard and say to yourself ” Do I want to die on this Hill today?”  No! There are mountains and valleys.. keep going!  This circumstance are meant to teach you something.  Take those bad things and look for opportunities.  Don’t feel like you have been trapped.  Knowledge is power and actions make progress.  Find leaders in the space making a difference and replicate them.  Follow successful people, do what successful people do and you WILL be successful.

Leveraging Social Media for Patient Advocacy #patientchat Highlights

Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Social Media Helps Your Connect with Others

 

 

 

 

 

 

 

 

 

 

 

 

 


Just Start

 

 

 

 


Think About When You Were Sick

 

 

 

 


Full Chat

 

Is There Sex After a Heart Attack?

Is it Possible? Is it Safe?

Anyone who has worked around cardiac patients have a humorous story to tell about their conversations with patients regarding sex. They usually sound something like;“Uh, my wife wanted me to ask you something.”

“What can I help you with?”

“Um, um, when can I resume, you know, normal activity?”

“What type of work do you do?”

“No, not that kind of activity, you know…the other kind.”

“I’m not sure what you are asking.”

“Um, you know, when can I start having sex again?”

It is a very common concern among people who have had heart attacks, open heart surgery, or even those who just had stents placed in their heart arteries. The short answer to the question is YES, THERE IS A SEX LIFE WITH HEART DISEASE. Most patients can resume normal sexual activity within a couple of weeks of their heart attack or stent placement. Those with open heart surgery may have to wait a bit longer because their surgical wounds need to heal.

There are some patients who may need to be evaluated prior to resuming sexual activity. Those who have congestive heart failure or certain rhythm disturbances should have a more in-depth evaluation before resuming normal sexual activity. Always keep in mind that just like other forms of exercises, like walking or climbing stairs, you should stop if:

  • You develop chest pain
  • You develop shortness of breath
  • You become dizzy

Certain medications may affect your body’s ability to have or maintain an erection; particularly beta blockers that are prescribed for most cardiac patients. Some patients react differently to these medications. A conversation with your physician may bring about a solution.

Do not use medications such as Viagra or Cialis if you have been prescribed nitrate medications like nitroglycerin for treatment of your heart disease. The combination of these medications may make your blood pressure drop to unhealthy levels.

Remember for most, sexual activity is safe and healthy following heart attack, open heart surgery or treatment for heart disease. Relax and enjoy your new lease on life.


For additional information:

Talking with Your Doctor

When Should I be Careful?

Yes, There is Sex After Heart Disease!

Living in Fear … Here is my Plan Should My Cancer Recur

Six years ago I went for my first mammogram. I was 40 and thought nothing more about it other than the obligatory 40 year marker of due diligence. In my mind, cancer didn’t run in my family, so this is just the beginning of my routine mammogram journey.  Imagine the shock when I was called back for more imaging the next day and then told to take a seat in the waiting room for what seemed like forever.  Shock turned to fear, as I sat listening to the radiologist tell me that I most likely had breast cancer and needed to see a surgeon right away.

The surgeon ordered a stereotactic biopsy which uses mammographic X-rays to locate and target the area of concern and to help guide the biopsy needle to a precise location. After the sample was collected, it was sent to a pathology lab to determine if there were cancer cells present. The 2 days of waiting for the results seemed like an eternity. The “what-if” was real. I had breast cancer.

Everything moved quickly from that point. Early detection was key to my plan that included a lumpectomy followed by 7 weeks of radiation. I opted for the earliest possible date for surgery and 2 weeks later it was done. Everything went by so fast that even to this day, I really don’t remember how I actually felt at the time because I was so focused on getting it done and moving forward.

Moving forward does include a new “what-if” that weighs on the minds of people in remission. What if my breast cancer returns? All the genetic testing I did showed little chance of recurrence, but still…what would I do this time?

What is My Plan if My Cancer Recurs?

I’ve done my share of diligent research on standard cancer care and cutting-edge cancer therapies. Much of the findings have me saying to myself “I wish I had known about this 6 years ago” and I talk with many other cancer patients saying this too. Through my discoveries, I took a profound interest in tumor storage. As a breast cancer survivor and patient advocate, my plan includes a more personalized approach to my cancer treatment.

First, I will store my cancer cells alive so that I can test various drugs on these cells and prioritize which ones (or combinations of) actually works (look up organoids), I can enroll in one of the cellular immunotherapy trials that activate the immune system to fight the cancer and minimize the chance of relapse (look up dendritic cell vaccines or T-cell therapy), and I can also genetically profile my tumor to identify targeted drugs and/or clinical trials to enroll in. I will have StoreMyTumor (www.storemytumor.com) handle the tumor preservation so that this will be an option for me tomorrow or in years to come. In my work, I see many advanced cancer patients have doors open for them that would not exist without their own preserved cancer cells available for testing different treatment options.

Personalized treatments start with the cancer cells, and I will lean on StoreMyTumor to be my resource for emerging personalized treatment options and trials all around the world. Every tumor is unique and contains information critical to treatment, but tumors are not preserved alive by hospitals and routinely discarded as medical waste.

Why are more patients requesting that their tumors be stored?

Cancer patients achieve a new level of control of their cancer management through their own Personalized Tumor Intelligence. I see this all the time as a Patient Support Coordinator interacting with cancer patients at all different stages. With the rapid pace of emerging new therapies, there is no reason to settle for the standard of care when there are better and more personalized options available. You just need to find them and be your own advocate to save your life.

Deceived But Not Defeated

I never felt any symptoms. I mean, I was tired, but what young 20-something who had just started graduate school while maintaining a full time job wouldn’t be? It happened during a physical. A lump towards the top of my throat was felt by my doctor. “I would go and have that scanned,” he said. I wasn’t worried; he had never mentioned cancer. So I went and had the ultrasound. “Well, we see what your doctor was talking about, and it appears to just be a cyst,” the doctor said, “but there’s another spot on the right side of your thyroid. You have two options. You can wait to see if the spot grows or we can perform a biopsy to see if it’s cancer,” he explained. “Now, the chance of it being cancer is anywhere between 10-15%, a very very low chance,” he reassured me. “I want the biopsy,” I said, not wanting to take any chances. The biopsy was performed, and within minutes, the doctor returned saying he had bad news. “Unfortunately, it’s cancer, but the good news is that it’s very treatable. I recommend you having surgery.” And that was it; although, it hadn’t hit me, at least not as hard as I thought it should had – at least not immediately. I went to my car, called my mom, and asked her if she was sitting down. I told her the news, still shocked by the ordeal I was just handed. In an instant, my life had changed forever. I heard those three words no one ever wants to hear, “You have cancer.”

I wasn’t sure how to proceed. How advanced is my cancer? What doctor(s) do I go to? How quickly do I need surgery? I just started school – do I need to drop-out already? What about my job. All of these thoughts raced through my mind. However, the support of my family and, luckily, not having any symptoms kept me going. I was working in a hospital at the time, and I spoke with a few of the doctors I worked with. “Oh, the good type of cancer. You’ll be just fine,” one said. “‘Good type?’” I thought. What is good about having cancer? He gave me the name of a surgeon who specialized in thyroidectomies. It was a five month wait to get in.

When I eventually saw my surgeon, he gave me two options. The first, he explained, was a partial thyroidectomy. “We’ll only remove the lobe of the thyroid where your tumor is. The benefit of that is that the other lobe will continue producing enough of the hormones that your body needs so you don’t have to take a medication for the rest of your life. The second was a total thyroidectomy, rendering me to that medication, literally, for a lifetime. I went with the former, and had a successful surgery. Of course, it didn’t end there.

Two days after my surgery, my doctor called. “We performed pathology on some of the lymph nodes that we removed from your neck, and unfortunately, almost all of them had cancer. What this means is that we need to have you come back and perform another surgery to remove the rest of your thyroid. Then after, you’ll have to undergo radioactive iodine to rid your body of any residual thyroid tissue.” My heart sunk. My world was crushed yet again. Another surgery? What was radioactive iodine? I didn’t how to process the emotions that I was feeling as tears streamed down my face. “It never ends,” I thought.

After my second surgery, I was thyroid-free. Later, I went through the radioactive iodine procedure where I had to be a specific diet for approximately 3 weeks. I could consume very little to no iodine, or salt, which was essentially in every product. As I went up and down the grocery store aisles reading every nutrition label, I found myself frustrated finding almost nothing that I could eat. Don’t get me wrong, this was a very healthy diet, as I was essentially restricted to meats (without seasonings), fruits, and vegetables. But it wasn’t my favorite. I went to a nuclear medicine center where I consumed a pill that would make me radioactive. I was to stay physically away from people for approximately one week, slowly decreasing the amount of feet I could be within others as each day passed. I then had a whole body scan that showed that the cancer hadn’t spread, or metastasized, to any other place in my body, but there was still some residual thyroid tissue that the radioactivity would hopefully kill.

The journey continued. I would need to be on a medication for the rest of my life. I would need to see a specialist, an endocrinologist, for the rest of my life. They would decide the dosage of my medication based on a variety of factors, including how I was feeling emotionally and physically. It wasn’t until after I had my thyroid removed that I realized how much it does for our bodies. “It will take some time before we find the right dosage for you,” my endocrinologist explained. In other words, sometimes I would be hyperthyroid, other times, hypothyroid. My symptoms may be all over the place, including my metabolism rate, my body temperature, and even my mood. As a patient with chronic depression and anxiety, I could only hope that the “right” dosage would be found quickly.

Fast forward two years later from my diagnosis, and I have been deemed “cancer free,” no more thyroid tissue. While I am incredibly thankful for this result, I can’t help but feel survivor’s guilt. I often think, “Why me? Why did I get to survive and others don’t? How did I get by so easily?” Despite this guilt, I have used my cancer diagnosis and journey to become stronger both mentally and emotionally. I have unashamedly shared images on social media and written stories that have been published in the hopes to inspire others and to be an advocate for those who don’t feel like they have a voice. Yet, I don’t pretend to know everything. I still have questions that remain unanswered. How likely is my cancer to come back? Why do I keep losing so much hair? Why am I always so tired? Despite having the “good” type of cancer, there is nothing that great about it. Although I never had symptoms, I still went through two surgeries and a radioactive iodine procedure, which had its own side effects.

As a result of what I went through and my never-ending passion for helping others, I believe that my diagnosis happened for a reason – to lead me to a career in patient advocacy. I have a background in health administration, policy, and communication. I have worked at doctor’s offices and hospitals. I feel I had an advantage in having the knowledge that I did/do, and access to physicians. However, I still get confused when I ask my doctor a question, and I receive an answer that’s in medical jargon. I think, “I can’t be the only one who feels lost, who feels confused.” Plus, I know that there are patients who are going through worse situations than I did. There has to be a way to mend the physician-patient relationship that is currently suffering. There’s not enough time dedicated to each patient, to hear what they’re going through each day. Physicians also need to make sure that what they’re saying/explaining makes sense to the patient, especially when it comes to taking medication(s) (patients with chronic conditions usually have multiple, which can be hard to keep track). There are solutions coming to the forefront, such as pill packs, patient portals, and support groups. But I believe this is just the beginning. Every cancer is different. No two patients are the same – indifference is ignorance. It’s time to combine research, health literacy, and ultimately, compassion for a patient’s story, to provide the best care and create better health outcomes.

Four-Legged Physicians: How Dogs Can Aid Patient Therapy

Dogs and humans have shared a special bond for over 12,000 years.  Clinical research has shown that dogs increase quality of life, finding that those living alone with a dog have a 33% decreased risk of death.  A study published by the Complementary Health Practice Review also found that pet owners are likely to have lower blood pressure, better cognitive function, and decreased anxiety than their non-pet owning counterparts. For those fighting along term or chronic illness, spending time with a dog can have broad health benefits for both the body and the mind.

Mental Health

A long term hospital stay is difficult for patients, particularly those in critical care units.  Even physicians with exceptional bedside manner can only do so much to mitigate the clinical nature of a hospital room. A study published in Critical Care shows that animal therapy can help ICU patients overcome the mental health issues associated with an extended hospital stay.  Bringing in a dog to engage with patients breaks up the monotony of the hospital, and improves mood. 74% of pet owners report improvements in mental health, showing that dogs lessen feelings of loneliness and isolation.

Dementia And Alzheimer’s

Patients in nursing homes go through many of the same problems as those battling in an ICU.  Nursing homes pose a particularly great challenge for those with dementia and Alzheimers, as unfamiliar settings and faces can cause distress.  A promising study published in the American Journal of Alzheimer’s Disease and Other Dementias shows that dementia patients enrolled in animal-assisted therapy had decreased levels of agitation and greater social interaction than a control group.  Notably, many of the patients involved in the study had owned dogs in the past.  A key part of treating dementia-type disorders is involving patients in activities that they have enjoyed over the course of their life.  For animal lovers in nursing homes, playing with a dog for even a few hours a week can have a massive impact on their quality of life.

Exercise And Physical Fitness

Most dogs are seemingly boundless, furry balls of energy – particularly high energy, social breeds such as Black German Shepherds. Walking and playing with a high energy dog is necessary for their happiness, and comes with the obvious benefit of weight loss and a decreased chance of diabetes for people as well.  The benefits of playing with a dog can be much broader than weight loss. Exercise is a vital part of physical rehabilitation, and has shown to cause remission of major depressive disorder on par with antidepressants in clinical trials.  Coupled with the effort required to keep them healthy, a dog can give a person recovering from an illness a greater sense of purpose, which helps patients mentally as well as physically.

Registering a therapy dog requires a bit of work, but is a worthwhile vocation for both dog and owner.  While medications and in-patient care are necessary for many illnesses, a visit from a dog can help make the arduous process of getting healthy a little less taxing and far more rewarding.

A Conversation With Becky Pleat

Specialty Pharmacy and the Patient Journey with Specialty Medication

In this segment of A Conversation With, Becky Pleat the Associate Director of Medical Managed Care Oncology Specialist at Sanofi discusses specialty pharmacy and the patient journey. Becky answers the following questions:

  1. What is a specialty drug?
  2. What is a specialty pharmacy?
  3. Where can patients find a specialty pharmacy?
  4. How do patients receive a specialty medication?
  5. Will a specialty medication be covered by a patient’s health plan?
  6. What kinds of services and/or resources are offered at specialty pharmacies?

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