For more than twenty years, the National Coalition for Cancer Survivorship (NCCS) had the privilege of adapting our friend and colleague, Jessie Gruman’s important work into the development of the cancer policy work that we engage in. Jessie’s vision of patient engagement was always ahead of its time, and her books and blogs and participation in numerous conversations in our community over the years contributed enormously to the evidence we now have about the engaged/empowered patient.
The Jessie Gruman Award for Patient Engagement was established with a grant from the Center for Advancing Health (CFAH) to honor the legacy of Dr. Gruman, a tireless advocate and leader in patient empowerment.The inaugural Jessie Gruman Award for Patient Engagement was presented to Ellen Goodman on October 21,2015 in Washington, DC. Ms. Goodman is a Pulitzer Prize-winning columnist, author, and the founder of The Conversation Project, a national public health campaign and suite of tools developed to change the way people talk about and prepare for their end-of-life care. As part of our celebration of Jessie’s life and the presentation of the Jessie Gruman Award for Patient Engagement, Jessie’s husband, Dr. Richard Sloan, and her colleague, Dr. Julia Rowland, recently spoke to us about Jessie’s driven personality and the influence of her work. We would like to share this special tribute with our readers, and extend our gratitude to Dr. Sloan and Dr. Rowland for their support.
Aspiring CEOs often view the work of visionary leaders such as Elon Musk and Alan Mulally and promptly place them on a pedestal. You may believe that the leaders you admire are smarter, luckier or more creative than you, but the traits that make them wildly successful can be honed over time.
These characteristics have dictated how these leaders have responded in the face of adversity, maximized available resources and made the decisions that set them apart. Here are five CEOs I admire and the traits entrepreneurs can hone to duplicate their success.
1. Elon Musk: Relentless innovation
Elon Musk, CEO of SpaceX and Tesla Motors, has revolutionized entire industries with his focus on moving beyond the status quo.
Both companies faced bankrupcy, and Musk was forced to decide between allocating his remaining funds between the companies or focusing on one. He felt compelled to support both ventures, and the risk paid off. Tesla is trumping Ford and General Motors with gross profit margins over 20 percent, while SpaceX was one of two companies chosen by NASA to develop the next generation of systems to take U.S. astronauts to the International Space Station.
“If things are not failing,” Musk says, “you are not innovating enough.”
2. Nick Woodman: Focus
GoPro CEO Nick Woodman’s idea was born from a personal problem: not being able to take great pictures and videos while surfing. After months of intense focus, a prototype was born. Woodman is now focused on building a bigger platform to allow GoPro users to easily share videos.
Founded 12 years ago, GoPro has made Woodman worth 1.3 million dollars. The company name is almost synonymous with the product category, like Xerox once was with copying.
3. Alan Mulally: Resilience
As Ford Motor Company’s former president and CEO, Alan Mulally is behind “one of the most impressive corporate turnarounds in history.” Mulally guided Ford out of billions in losses and avoided bankruptcy without government bailouts. His focus on teamwork and accountability created a new company culture that drove results and focused on positive leadership with a vision toward moving forward.
4. Shantanu Narayen: Adaptability
Businesses that become stagnant usually die. Adobe Systems CEO Shantanu Narayen looked down the road and didn’t see a future that included distributing software on physical discs. He decided to change the widely-used Adobe Creative Suite to a subscription-based model.
He wasn’t the first, as Netflix had added streaming to its DVD rental services. But Adobe’s graphic design empire was built on its box sets and annual releases of new versions. Narayen boldly changed his company’s distribution model, and the growth in subscription members has proven its success.
5. Philip Krim: Reimagining
Casper CEO Philip Krim, along with his co-founders, has completely reimagined the process of buying a bed. From the price to the delivery — the mattresses are shipped compressed in reasonably sized boxes — this startup has thought through the entire process, including a 100-day trial period.
The company, which launched in April, raised 15 million in funding and earned more than $1 million in revenue in its first month of business. Krim’s success proves that innovation isn’t only for high-tech industries.
How to cultivate your own successful traits
As a leader, you may not embody all of the traits mentioned above, and that’s OK. It’s important to know which traits come naturally to you and which may not.
While you don’t have to follow all the advice you receive, remain receptive to new ideas. As you accumulate experience, examine your actions and ask for regular feedback to discover your strengths and weaknesses.
To develop your own leadership style, find a variety of mentors. Mentors can provide experienced perspectives to help you determine the best way to respond to business challenges. These mentors could be peers, potential investors or leaders from entirely different industries.
Don’t just rely on your mentors’ experience — search for case studies. Consume as many news stories, articles, documentaries, books and blog posts as you can to learn how others approach challenges.
Finally, network to gain additional perspectives. Take advantage of workshops, conferences and other opportunities focused on leadership development to learn new skills and network with others who can offer diverse points of view.
Many of the leaders you admire aren’t superhuman — they’ve honed their ability to utilize their best traits to drive positive change within their organizations. Your approach to a situation can mean the difference between positive mental health and burnout, profit and loss and success and failure. When you learn to harness your greatest strengths, you become a better leader and a catalyst for change.
To avoid ‘caregiver dementia,’ it’s important to find joy amid the devastation and frustration
Elisa cared for her husband who lived with dementia. When she couldn’t care for him at home any longer, she arranged for him to live in the only Alzheimer’s care facility in our community. My father eventually moved there too, and she and I became good friends after meeting at a caregiver support group session.
We’d visit each other’s loved ones. This reduced the feeling of needing to be there all the time, and still ensured our family members were provided with stimulating diversions.
Despite being in her 80s, Elisa maintained a full volunteer schedule, traveling hundreds of miles each week. She’d tell me that her children had a hard time keeping up with her. She was an energetic powerhouse who referred to her husband as her “short man.” She affectionately called him chapparo. I was eager to learn more Spanish words, but for some reason, could not remember this one. Instead, the word chalupa came to mind.
When I’d visit, sometimes, I’d say in Spanglish, “Hola, Jose. I am your wife’s friend, Brenda. She tells me you’re her chalupa.” He was bedridden with advanced dementia and reacted slightly. Yet, Elisa remarked on several occasions that he seemed to be more responsive to my visits than hers. So, why was it, when I called him chalupa, he didn’t respond? I would learn why during my next visit.
Elisa was at her husband’s bedside when I popped into the room and greeted them in my mixed Spanish and English. Again, he didn’t respond but she cracked up laughing. She then leaned in to tell Jose something. He turned toward me.
“What? Elisa, what did I say?” I asked.
“You’re calling my husband a boat,” she said semi-seriously.
We both had a hearty laugh. After that incident, I’ve managed to remember the difference.
Caregivers Say: ‘We Have to Laugh, Otherwise We’ll Cry’
Regardless of how uplifting and joyous we try to be, caregiving invites suffering at times. If we learn anything from the comedians who make us laugh, it’s to find the humor in life’s struggles. The following story illustrates how one’s past may create short-temperedness and anger, until something unexpected happens, causing laughter. It’s an example of how we can find the joy in caregiving.
The Flu and Wanting to Strangle My Father Before Laughter Saved the Day
After my father was diagnosed with dementia, his meticulous grooming and sometimes twice daily showers during his working years morphed into no showers and no change of clothes for months at a time. My mother passed away three years earlier, and lacking local support from my siblings, my husband and I agreed to move my father from Wisconsin into our California home.
By this time, his dementia had progressed to a diagnosis of probable. I had to keep an eye on my father to ensure he washed his hands before handling food after he came home from adult day care, used the bathroom or tinkered in the garage. Call me a germaphobe, but I can easily catch a cold or the flu. My husband didn’t fully appreciate my greater need for cleanliness, since he has a strong immune system, built as a boy who got into all sorts of messes. I was the lone soldier in this battle to make sure my father washed his hands.
I couldn’t watch him every minute. There were times when he’d reach for the middle slice in a new loaf of bread or dip his spoon into a jar of honey, lick it and then scoop out a spoonful of peanut butter.
Soon, he became ill. I raced him to urgent care when his fever topped 104 degrees. Then I became ill. Weakened and battling the chills, I felt anger toward him for causing this preventable situation.
Fortunately, the weekend brought a change of pace. With the emotional embers still smoldering, my husband, father and I sat in the family room reading the mail and newspaper. Suddenly, my father rose and stomped toward his bedroom. He stopped abruptly, turned around to look at us and sternly demanded, “Where’s my room?”
My husband said, “I’ll show you, Mardig,” as he rose to lead him down the hallway. I got up and followed closely behind. Still upset about the unnecessary illness we endured, I whispered, “David, look!” My father’s hearing was poor, so he kept walking as David turned to see me miming hands around my father’s neck, as if to strangle him. Since I typically don’t react this way, David began laughing. My father stopped, looked at David and then at me. Trying to cover up my guilt, I smiled like a Cheshire cat. David continued laughing. My father looked serious yet confused. Trying to figure out what was happening, he mirrored our reactions. A smile appeared and then he, too, began to laugh. Amazed at just how close to bottom we hit just a few days earlier, I started laughing, too.
What a breakthrough. Standing in the hallway, each of us laughing for different reasons, we must have wondered: “What are we doing, standing here laughing?” And this is what we mean when tears are dried with laughter. Thus, we returned to the family room with unburdened hearts filled with joy … for the time being.
5 Tips for Finding the Joy in Caregiving
Learn about and use available resources in your community. My father attended adult day care services during the weekdays. I went to a weekly support group and learned as much as I could from local and online resources.
Take a caregiver respite. Sometimes, just a five minute respite will help you regain perspective in a tense situation, and help you find a more workable approach to caregiving.
Know that the person with dementia is trying hard to manage day to day. Alzheimer’s robs the brain of the cells needed to make sense of the world.
Learn as much as you can about the disease or illness to know what to expect.
Care for your loved one the way you would want to be cared for if you were living with the same disease or illness.
If you don’t do these things, you run the risk of getting caregiver dementia.
For many years, research has shown that a positive outlook directly benefits one’s health. Researchers have found that people who view things in a positive manner are able to better handle day-to-day stress. This sounds insignificant, but stress leads to ailments such as headaches, inflammation, obesity, and insomnia just to name a few. Research has found that positive thinkers handle stress so effectively that there are no lasting side effects after the occurrence of a stressful event. Regardless of whether or not a positive mental attitude is your natural state, working on keeping a positive outlook is important because if you are a caregiver, I can guarantee that you have stress in one way or another and can benefit greatly.
A Positive Focus
If you are an informal caregiver for a loved one, a critical life change most likely precipitated your role change. This type of drastic life change causes high amounts of stress. Often times, it is hard and nearly impossible to view these events in anything other than a negative light. The difference between someone who is positive vs. someone who is negative is that the positive person focuses on what they can change and the negative individual will often focus on what they can’t. The key to coming out of a stressful situation is believing you can make a change and then working in small steps to implement that change. Set caregiving goals because thinking you cannot accomplish something will often result in that thing becoming impossible to do. While some things can’t be changed, don’t ignore the small victories that occur each day.
Why Does Pessimism Lead to Harmful Health Consequences?
Not only does pessimism rupture your relationship with the person you are caring for, but as mentioned in the beginning, long-term stress can lead to personal health issues in the future. These issues stem from a hormone our body produces called cortisol. Cortisol was meant to protect us from predators in ancient times, sometimes called the flight or fight hormone. It is what heightens our awareness during periods of imminent danger. It’s great if you find yourself in a life or death situation, but unfortunately, it has little place in the world we live in today. Many less dire events can trigger an increase in cortisol and according to the Mayo Clinic; an increased level of cortisol in the body over an extended period of time is dangerous. Cortisol can lead to issues such as diabetes, obesity, lowered immune function, heart disease, depression, and lower bone density.
A Study on Thinking Positively
Dr. Dennis Charney, dean of Mount Sinai School of Medicine, conducted a study where he had 750 Vietnam War veterans list a pre-designated grouping of qualities about themselves from most relevant to least. He was attempting to figure out some of the reasons why the veterans developed post-traumatic stress disorder. He had a hypothesis that those who were optimistic would have the lowest cases of PTSD. After conducting the survey he found that those veterans who didn’t develop PTSD all listed optimism at the top of their list as a defining quality. Optimism was followed by selflessness, humor, and a belief in a higher power. All of the people who didn’t develop PTSD noted that they believed their lives and actions had meaning behind them – all part of a positive outlook on life.
This study may seem irrelevant for caregivers, but the New York Times found that the stress many caregivers suffer from has PTSD-like symptoms. Even in the most trying times, try to remember that the reason you are caring for someone is because you love them, and this physical demonstration of love gives meaning to your actions.
Although many people feel it is their duty to take care of their spouse or aging parents, sometimes it becomes physically impossible. Seeking professional help does not mean you are giving up on the person you love. Caregivers must ask themselves whether or not their charge is affecting their own stability and health. If your loved one begins to affect your sleeping and eating schedule or you are simply stressed out all the time, it may be time to consider a professional assisted living environment. When things feel overwhelming remember there are support groups and healthcare professionals who can assist you. Also, if you feel you can no longer care for your loved one, but cannot afford professional care, don’t get too discouraged because there are financial aid programs offered by federal and state government.
Max Gottlieb is the content manager for Senior Planning. Senior Planning provides free assistance to seniors or the disabled and specializes in long term care—mainly finding and arranging care services, transitioning people into senior living, and applying for state and federal benefits.
Don’t let insecurity get in the way of your goals.
Insecurity kills more dreams than lack of talent does. Believing things like “I’ll never get promoted” or “I can’t compete with the other businesses” will turn your self-doubt into a self-fulfilling prophecy.
All of us experience self-doubt sometimes, no matter how confident we are. But, mentally strong people don’t let self-doubt prevent them from reaching their goals. Here’s how to keep self-doubt from holding you back.
1. Embrace a little self-doubt.
Don’t worry about a little self-doubt, because slight insecurity could actually bolster your performance. A 2010 study published in Sports and Exercise found that individuals who experienced a little self-doubt actually performed better compared with people who were completely confident in their skills. Other studies have found similar results.
So rather than waste energy worrying that your self-doubt is really a sign from the universe warning you that you’re about to fail, recognize that self-doubt can be helpful. Perhaps you’ll spend more time rehearsing or maybe you’ll put in more effort when you’re aware that there’s a chance it might not go smoothly.
2. Examine the evidence behind your thoughts.
When you encounter serious self-doubt, examine the truth behind your thoughts. Ask yourself, “What evidence do I have that I can’t do this?” Then ask yourself, “What evidence do I have that I can do this?” Write down your answers on a piece of a paper.
Looking at the facts can help you see things in a more realistic manner. Although this exercise may not eliminate all of your self-doubt, examining the facts can help reduce your insecurities to a more helpful level.
3. Consider the worst-case scenario.
Self-doubt is fueled by catastrophic predictions like “I’m going to mess everything up.” When you find yourself guessing things will go poorly, ask, “What’s really the worst thing that could happen?” If you do make a mistake, would it really be that bad?
Remind yourself that even if things go terribly, it’s unlikely to be life altering. Losing a game, stumbling over your lines, or failing to get a promotion probably won’t matter that much in a few years. Keeping things in proper perspective can help calm your nerves.
4. Monitor your emotions.
Your emotions play a major role in how you think and behave. Anxious feelings can fuel doubtful thoughts and impair your performance, unless you take steps to regulate your emotions.
Pay attention to how your emotions influence your choices. If your anxiety skyrockets, calm your body and your mind by taking deep breaths, going for a walk, or distracting yourself with mundane tasks. Don’t allow your short-term discomfort to convince you to bail out, give up, or cave in.
5. Focus on your present performance.
Whether you’re stepping on a stage or running out onto an athletic field, telling yourself “I’m going to embarrass myself” will distract you from your performance. So rather than allow your inner monologue to drag you down, stay focused on the present.
Before you take the giant leap into whatever you’re feeling doubtful about, give yourself a quick pep talk. Saying “All I can do is my best” will remind you that you don’t need to strive for perfection. With that reminder, you’ll be better equipped to put your energy where it needs to be–on your performance.
This is the story of Lester Potts, a man living with dementia who through an engaging art teacher realizes a gift for painting even though he had NEVER before picked up a paint brush in his life.
So much of our thinking and actions during a typical day as caregivers of persons with dementia invariably gravitates to compensating for deficits. We look for eroding skill sets and abilities in our loved ones like sailors search the sky for hints as to what the weather might bring us next. We scrutinize the familiar face that has become our horizon for any clues as to what the ever changing winds of dementia might bring in on the next wave so that we might better prepare to help our loved ones and ourselves “get through” each new challenge without the risk of capsizing under the weight of uncertainty that often accompanies an ever changing future. We constantly adjust the sails that are the approach we use with our loved ones in order to best maneuver around what they can no longer do.
What we don’t do, what we don’t let ourselves do often enough is reflect on what skill sets and abilities remain intact despite dementia. What I can almost guarantee is that we rarely consider that persons with dementia (including Alzheimer’s) can access and develop new abilities never before identified prior to the onset of the disease.
How often do we look for that which we have never seen? For instance, a remarkable remarkable and never before demonstrated artistic acumen that revealed itself only after living with dementia? This was the first lesson Lester Potts taught us, but it wouldn’t be his last.
Who is Lester Potts?
Lester E. Potts Jr. was born in 1928 in Mississippi in a logging camp, a place and vocation that would remain a lifelong source of comfort and sustenance even in the hardest times. At age 2, he and his family moved back to a home in Pickens County, Alabama. As a young man, he learned well the work ethic required of those witnesses to the Great Depression through laboring in a saw mill. “He served his country in the Korean War. And after the war, he labored as a saw miller in rural Alabama. He never painted a picture in his life,” notes Daniel C. Potts, MD, FAAN and the artist’s only child.
Dr. Potts further recalls that his dad was “diagnosed in his early 70’s with Alzheimer’s disease. Lester experienced a growing depression as he began to lose memory, language and dexterity. When an opening became available, he enrolled as a client at Caring Days Adult Dementia Daycare Center (The Mal and Charlotte Moore Center) in Tuscaloosa, Alabama. Alzheimer’s caused damage most notably to the parts of his brain associated with memory and language ability. A kind volunteer artist named George Parker helped Lester to begin painting watercolors, and over a four year period until his death, he painted over 100 of them.”
“At first, his teacher would show him pictures to get him started. However, toward the middle and end of his painting career, most of what Lester painted was from his mind alone,” Dr. Potts recalled. “All of the images that he painted during the more advanced stages of Alzheimer’s were pictures created in his mind and imagination, and from his earlier life experiences. He had almost no speech, but in his silence, he listened with his heart and was very attentive.”
How often do we look for that which we have never seen? The fact that Lester had never expressed himself through art prior to the onset of Alzheimer’s thankfully didn’t stop George Parker from giving Lester the opportunity to try. It is a powerful idea that persons with dementia (including Alzheimer’s) can access and develop new abilities never before identified prior to the onset of the disease. It is a hopeful and inspirational thought that there may be undiscovered yet still accessible parts of our loved one’s personhood that await the opportunity to be revealed. This idea was such an impactful and innovative example of the miraculous possibilities for persons living with dementia that Lester’s art was the inspiration behind starting the non-profit foundation Cognitive Dynamics whose mission is “To improve the quality of life of persons with cognitive disorders (such as Alzheimer’s disease) and their caregivers through education, research, and support of innovative care models which promote human dignity, especially therapies employing the expressive arts and storytelling.”
The Broken Jar and Seasons of Caring
Dr. Potts would later compile a collection of his father’s art work and combine it with his own poetry in a beautiful volume entitled The Broken Jar with all proceeds from the book going to benefit Caring Days Adult Dementia Daycare Center (the very program where Lester realized his joy of painting). Lester’s art was also featured in Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers, a first of its kind, interfaith volume of more than 140 original meditations from 70 religious leaders and care specialists – many caregivers themselves – representing 17 faith traditions with all proceeds benefiting the ClergyAgainstAlzhemer’s Networkand its efforts to support families and stop Alzheimer’s.
Lester Potts’ artwork has continued helping people to think differently about persons with dementia and what they are capable of long after his passing in 2007. I think Lester’s story and the way his son, Dr. Potts has helped share it have done much to advance the recognition of Art Therapy as a way of maintaining personhood and encouraging self-expression for those with dementia.
We hear so much these days in the news, on social media and in many caregiver books about Art Therapy that we might be pretty sure we know what this means. What may come to mind when we think of Art Therapy for persons living with dementia may be activities such as painting, adult themed coloring books that encourage the more dignified use of pencils versus crayons, cutting out magazine images to make collages and in general anything related to creative expression, right?
The American Art Therapy Association (AATA), is a national professional association of over 5,000 practicing art therapy professionals, including students, educators, and related practitioners in the field. The AATA defines Art Therapy as “a mental health profession in which clients, facilitated by the art therapist, use art media, the creative process, and the resulting artwork to explore their feelings, reconcile emotional conflicts, foster self-awareness, manage behavior and addictions, develop social skills, improve reality orientation, reduce anxiety, and increase self-esteem. A goal in art therapy is to improve or restore a client’s functioning and his or her sense of personal well-being. Art therapy practice requires knowledge of visual art (drawing, painting, sculpture, and other art forms) and the creative process, as well as of human development, psychological, and counseling theories and techniques.”
Lester’s art truly helped bring this type of therapy to many persons living with dementia that may not previously have been considered capable of participating in this type of activity. That in itself was a huge gift he gave to others impacted by the same illness.
But it didn’t stop there; here’s where something altogether surprising and unexpected in the most joyful of ways happened. Lester had a second lesson in store for us that was about to be discovered.
Treasure for Alzheimer’s
“Dr. Potts sent Dr. Richard Morgan a portfolio of his father’s artwork created after the diagnosis of Alzheimer’s. The art is arranged chronologically, and all of it was produced at Caring Days from about 2002 through 2005. Prior to receiving this gift, Dr. Morgan had begun showing Lester’s artwork from Seasons of Caring: Meditations for Alzheimer’s and Dementia Caregivers to residents in the Memory Care Unit at Redstone Highlands, near Pittsburgh, Pennsylvania.” – excerpt from TREASURE FOR ALZHEIMER’S – Reflecting on experiences with the art of Lester E. Potts, Jr.
Co-authored by Richard L. Morgan, PhD and Daniel C. Potts, MD, FAAN, TREASURE FOR ALZHEIMER’S contains an exciting array of anecdotal case studies demonstrating the impact Lester Potts’ artwork has as a therapeutic activity with those experiencing dementia (including Alzheimer’s) at each stage in the disease process and from a variety of different socio-economic backgrounds. Dr. Morgan “marveled at how Lester’s art touched places buried deep inside, and caused the residents to smile, and at times, to speak. He wanted to explore this further after receiving a full portfolio of Lester’s work to share.”
Dr. Potts noted that “This may be the first time that the art of a lay person with Alzheimer’s has been used therapeutically with people who also have the disease or dementia of other causes.”
Connecting through Creating and Sharing Art
What if the second lesson Lester Potts’ legacy was as important as his first? What if Lester is teaching us that in addition to creating art we can enhance self-expression through the sharing of art between persons impacted by dementia (including Alzheimer’s)? What if there existed a type of artistic shorthand more readily recognizable to persons living with the same type of cognitive deficits? Stripped of any desire to impress, or have commercial worth, or be imbued with layers of nuanced complexity that may hinder artists through the ages that desired relevance and immortality? What if persons with dementia communicate more effectively with each other through sharing their own art with each other – which at its core is about their personhood, their feelings and their self-expression in its purest and most unadulterated form?
Free from fear of judgment and without the need to be defined by others it is art as expression in is truest and most comprehensible form. What if Lester taught us that not only are persons living with dementia still very capable of participating in new forms of self-expression, such as art, but that to have a meaningful art therapy program it should also include the sharing of these works between persons living with dementia? What if art work created by persons with dementia was more relatable, more accessible to other persons living with dementia than more noted or famous types of art throughout the ages? What if the “Rosetta Stone” of reaching persons with dementia was there all along – what if it was all about making space for these unique and creative and capable persons to access and share all of the parts of their humanity that still most certainly yearn for the recognition of self and the connection with others?
Dr. Potts has written, “Through the process of art therapy, relationships are built, empathy fostered, and anxiety lessened. It’s a matter of persons with Alzheimer’s discovering new ways of expressing themselves and communicating their life stories to others.” As demonstrated in the video below, Potts’ beautiful watercolorshave done and still do exactly that.
Oct. 14, 2015 — Pauline Cafferkey, the Scottish nurse who survived the Ebola virus and was thought to have made a full recovery, is now critically ill, officials say.
Cafferkey, 39, was discharged from the high-level isolation unit at London’s Royal Free Hospital in January, but she’s now back there receiving treatment for what doctors say is an “unusual late complication of her previous infection by the Ebola virus.”
She became ill last week, but her family says an after-hours doctor sent her home rather than referring her to a specialist for treatment.
Cafferkey had gone back to work as a nurse, and last week was presented with a Daily Mirror Pride of Britain award on behalf of the British Ebola aid effort by Samantha Cameron, wife of the British prime minister.
“My thoughts with this brave & inspiring woman. Wishing her strength at this time,” tweeted Nicola Sturgeon, head of the Scottish government.
“We know that Ebola can linger for many months after visible symptoms have cleared,” says Jonathan Ball, a professor of molecular virology at the University of Nottingham in Britain. “We also know from outbreaks in the past that survivors can show a variety of symptoms, and the debilitating effect of these can last for a very long time.
“But this is frankly staggering. I am not aware from the scientific literature of a case where Ebola has been associated with what we can only assume as life-threatening complications after someone has initially recovered, and certainly not so many months after.”
Dr. Nathalie MacDermott, a clinical research fellow at the Imperial College London, adds: “This is an unprecedented situation in medical terms and an uncertain time for Pauline and her family.
“The change in her condition does not imply any increased risk to the general public, as stated previously the risk to the general public who may have had contact prior to her deterioration remains extremely low.
“It is unlikely that anything could have been done to prevent this relapse; this is an unexpected situation which could not have been anticipated. It is difficult to know whether any earlier intervention may have altered her current condition, as we are only just learning about the potential long-term effects of Ebola virus disease and management of complications/secondary effects.”
Cafferkey caught the disease while working for the international charity Save the Children at a treatment center in Kerry Town, Sierra Leone. She became ill after returning to the United Kingdom.
She was the second person from the U.K. to recover from Ebola during the recent outbreak. British volunteer nurse William Pooley was treated in the same special unit after also being infected while working in Sierra Leone.
The Royal Free Hospital has an isolation unit and infection-control protocols with specially trained staff ready to deal with Ebola cases.
Experts say the risk of catching Ebola from another person is low. The virus is spread by direct contact with the blood or body fluids while an infected person has symptoms.
The Ebola outbreak in West Africa appears to have receded. For the first time since March 2014, the World Health Organization says no confirmed cases of Ebola were reported during the week of Oct. 4.
There are still no fully approved vaccines or treatments against Ebola, though some trials have shown promising results.
Ebola Remains in the Body
It was already known that the Ebola virus can live on for a long time in certain parts of the body like the eye even after it is undetectable in the person’s blood.
People said to have recovered from Ebola can also continue to have health problems like fatigue, pain, and vision problems.
The Ebola virus can shelter in what are known as “immune privileged sites” in the body, including the eyes, central nervous system, and testicles.
Men who have had Ebola are advised to abstain from sex or to use condoms, as the virus can be spread through semen.
Although the risk of Ebola survivors passing on the virus appears to be low, some experts are concerned that the many survivors in West Africa could trigger further outbreaks if they become unwell again.
Breastfeeding and pregnancy may pass on the virus to babies, even if mothers haven’t shown Ebola symptoms.