I never imagined that writing about my personal life would catch the attention of a global health-care foundation and turn me into a globe-trotting, public speaker at an international medical conference in the Middle East. But in this social media age, getting thrust onto the international business stage is possible—even when you least expect it.
I was born with thalassemia, one of the most common genetic blood disorders in the world. There are three versions of the disease: minor, intermediate and major. Those living with thalassemia minor are typically unaware that they have the illness. While those who have the major form, like me, live with a dysfunctional bone marrow that produces misshapen red blood cells that cannot transport oxygen to cells, thus requiring triweekly transfusions for survival.
Estimates indicate that at least 12 children suffering from thalassemia are born every hour around the world and almost 490 million are carriers of genetic hemoglobin disorders globally. While bone-marrow transplants and new gene therapies have led to the potential cure for some patients, most who inherit the disease will die from complications.
I started blogging and sharing my experience on Facebook and Twitter. In April 2013, one of my Facebook posts inspired a message from Riyad Elbard, president of the Thalassemia Foundation of Canada, asking me to share lessons on emotional wellness, a topic that I write about, at the Thalassemia International Federation World Congress, which took place in Abu Dhabi, United Arab Emirates, in October.
Elbard mentioned that he enjoyed reading my blog posts on Facebook and thought I could offer a much-needed message about how to thrive with medical challenges. Simply put, emotional wellness means embracing, rather than denying emotions, so we learn to cope with stress and anxiety in a way that results in a positive approach to life. Freedom from negative thoughts and behavior patterns leads to emotional wellness.
Chronic illness causes emotional trauma, but since I've been dealing with my illness since birth, I've taught myself many coping mechanisms that helped free me from the depression and anxiety faced by most newly diagnosed patients. I started blogging as a way to broaden the message of emotional wellness.
First, I recognized how fearful I was to talk about my illness and knew that most others with the disease also felt the same way. I knew that was no way for a person to live, and it was worth sharing my personal stories if it meant leading to change in the way other people viewed themselves.
Second, I noticed that most newly diagnosed cancer patients are at odds with their need for medical treatment. I see them when I go in for my medical appointments and I have become friends with many over the years. Older patients have difficulty accepting that they are sick and this can result in extreme anxiety and depression.
My blog intertwines personal stories with ideas learned from my days in graduate school (I received a Master of Social Work degree with a concentration in clinical psychology). Every post is created to share an anecdote from my life and offer psychology/behavior modification techniques that can change the way a person thinks and acts.
At first, I was extremely hesitant to present at the conference. I had never spoken to an international audience and I had never traveled to the Middle East. Fortunately, my social media interaction helped me realize that my stories were already resonating with people across cultures.
To prepare for my presentation, I decided to first get a read on the worldwide thalassemia population by way of Facebook. I went on to Facebook thalassemia groups and simply asked, "What are the biggest emotional/psychological challenges for thalassemia patients?" Even though I know what the experience is like firsthand, I still wanted to hear about it from other people.
Facebook being a global brand, my post was answered by people from Canada to India. I received about 100 responses, many of which were similar in nature—self-esteem issues, and a fear of talking openly about their illness. So, I decided that these were universal topics I could speak on. My proposal was accepted, and I in turn accepted a new personal challenge: to talk for 20 minutes in front of several hundred people about the disease I have lived with since birth.
After a 12-hour flight from John F. Kennedy International Airport, I arrived in Abu Dhabi. The weather was hot and humid; my first day at the conference was a whirlwind of new people and seminars. Before arriving in Abu Dhabi, I had read multiple websites and asked well-traveled friends for ideas on respectful dress for tourists of the United Arab Emirates.
Several people had me thinking I might have to wear a headscarf and full-length clothing, while others told me to dress the way I normally do. I ended up packing long-sleeved cardigans and knee-length or longer skirts and dresses. I quickly learned more interesting, less stereotypical things, about Middle Eastern clothing.
On the day I arrived I began learning firsthand from those leading the global fight against thalassemia. I met an impassioned young man from Afghanistan named Saqib Niazi, founder and CEO of Meena Health Welfare Organization.
Saqib's sister Meena had died at the age of 15 from thalassemia. He told me that children born with thalassemia in Afghanistan have a small chance of living a normal life because they do not have the medicine needed to remove excess iron from their bodies.
When a person is chronically transfused, iron builds up in their organs, leading to early death. The only way for patients to survive into adulthood is through expensive iron chelation drugs, which families in Afghanistan cannot afford. Niazi attended the conference in hopes of bringing awareness to his organization and gaining funding.
My presentation took place on the third day of the conference, and I was given a special vote of confidence: Before going on stage, I was introduced to His Highness Sheik Zayed bin Sultan Bin Khalifa Al Nahyan, a prince within Abu Dhabi's ruling family.
One in 12 people in the UAE are carriers of thalassemia. By the time I spoke, I felt comfortable and confident about my presentation. Those who couldn't speak English were provided with translation devices, so there wasn't a language barrier.
When my speech was over, I realized that my personal stories were the hooks that resonated most deeply. The audience gave me a standing ovation and upon leaving the stage, I was met by people with open arms and tears in their eyes. People who weren't fluent English speakers came up to me with a pen and paper, asking me to write my name for them. A flood of people with accents from all over the world greeted me and hugged me. The feeling was euphoric.
Against my initial fears and preconceptions, the experience taught me that human emotions are universal and personal stories resonate across all cultures. And now that I have made contact with nonprofit leaders, such as Maria Kastoras, Australian TIF representative, and Gabriel Theophanous, president of the United Kingdom Thalassemia Society, I plan to partner with them to create content (both for profit and for free) that they can share with their audiences.
I will also use this speech to leverage more opportunities to present in front of new audiences. My ultimate goal is to turn my 34 years of experience as a thalassemia patient, Master of Social Work degree holder and person interested in healthy living into a global health and wellness brand that contributes to children in less-fortunate countries. With a book on the way and allies in many different countries, I know I can make it happen.
For anyone else looking to build a global audience with their blog, here are five tips:
1) Be clear about what niche you want to be known for. Create an identity for yourself when introducing your brand to others. What can you help people achieve?
2) Define your audience. Who are they, where do they hang out online and what do they love reading about?
3) Write candid pieces that teach lessons and promote your work in places where your audience lives. This means sharing your work on social media, websites with larger audiences, and talking about your expertise and mission with anyone who will listen.
4) Use social media to get to know your audience and network with professionals. Generate new content based on what you learn from those who follow you. Also reach out to organizations that might be interested in your blog; provide them with previously published work and ask them to share it with their audience. If you're interested in reaching people in a particular country, Google bloggers and groups in that country, then reach out to them and tell them about your mission. A nonprofit leader in Bulgaria liked one of my posts so much that he translated it into Bulgarian and shared it with patients in his local hospital. If people don't find you, find them. Connect with those whose mission is similar to yours and be of service to them, so they can be of service to you.
5) Write on a consistent basis. Pick a day of the week and post on that day, either weekly or biweekly.
Read Josephine's blog thalassemiadiet.com.