The WELLalarm Blog

Yes, I am Grateful For My Illness as Crazy as it Sounds....

I know it sounds a bit strange, but yes, in certain respects I am grateful for my illness and the perspective it has given me. Take a second and listen while I explain why:
Gratitude and Perspective from Stephanie Cion on Vimeo.

Vlogging About LIVING with A Chronic Illness: My First Vlog Post

Chronic Illness Today - America's Dirty Little Secret.     

It really shocks me, but the reality is that chronic illness has really become one of those dirty little secrets we are afraid to really discuss. Its new don’t ask, don’t tell.  And when we do discuss it, it is almost always in the negative or with the focus being on the short-term acute conditions. I am not even going to discuss the amazing dearth of support resources to enable people living with chronic illnesses to become or remain active functional members of society.

Media coverage related to actually LIVING with a chronic illness often disgusts me. There are a plethora of examples out there, but here is a high profile one: Steve jobs decision to not discuss his health at different points with his employees, investors, etc and the uproar around his decision. I do not know about you, but I saw many articles on the ethics of this decision. However, there was little to no discussion of how much he has accomplished for Apple while battling a chronic illness.

What We Are Doing About It!

Therefore, today we will be starting something a bit different and exciting on the blog! No worries - the blog will continue as usual however we will be adding video! This will be a series of personal post from me, Stephanie Cion, the founder of WELLalarm. I will be extemporaneously discussing life as thirty-something female entrepreneur in NYC who happens to have a chronic illness. (Please keep in mind, I am a very shy and private person by nature, so to say this doesn't come naturally is a huge understatement!) Just to be clear, I will NOT just discuss my illness – because I am not defined by illness – not by a long shot.

However, as managing a chronic illness is part of my life (and the lives of 90 million other Americans) I think it is important to be open and honest about the good, the great, the bad and the ugly of what it means to be part of one third to one half of our population LIVING with a chronic illness because as far as I can surmise it is the only way to get people to appreciate the very real challenges many people face in our society.

So here goes nothing!

Stephanie's Story - Life and Entrepreneurship - with a Chronic Illness (CIDP). from Stephanie Cion on Vimeo.

Is Health Care a Right, a Privilege, or a Responsibility?

I'm the founder of a wellness company, a former health insurance executive, and I have a chronic illness. Needless to say, I sit up when the candidates start talking about health care reform. In Tuesday night's debate Tom Brokaw asked the candidates if health care is a right, a privilege, or a responsibility.

I bristle at the implication that there is only one answer to that question. For me, the answer is all of the above. Of course it is essential that each of us take personal responsibility for our health care. But if the last three years have taught me anything, they've taught me that you are never fully in control of your health. You can get hit by a car. You can inherit a condition. You can come down with a disease no one has ever heard of, that requires a lifetime of medications and treatments.

Meanwhile there is the problem of paying. Maybe you have health insurance. Maybe you got hit by a car between jobs. Maybe the only health insurance you could afford is totally inadequate.

Part of the contract of being a civilized nation is that we all have a stake in each other's health. I saw this in action when I saw so many bloggers come to Stephanie and Christian Nielsen's aid, raising funds to help with their devastating accident. I admit, while I was heartened by the response I also wishe every family struck by a major health calamity had this many people rushing in to help.

In a way, we can do that when we vote in November. We can vote for the candidate whose health care reform proposal aims to provide health care for everyone.

WELLalarm has launched!

I am tremendously excited to announce the Beta launch of WELLalarm™! The new website is up and running and our electronic doors are open for business.* This is the culmination of a year of hard work and fine tuning not just by me but also by my colleagues. I'm proud of what we have created and I know it will just keep getting better.

WELLalarm™ is a web-based service that allows clients to securely store their health records and access them 24/7 from anywhere in the world.

In an emergency, WELLalarm’s™ patent pending-technology enables life-saving medical information such as blood type, medications, allergies and emergency contact information to be accessed in seconds by concerned bystanders or emergency medical officials by phone, text, url or mobile device.

Our product line includes our medical alert jewelry line, WELLcharms™ and WELLtags™, sophisticated medical ID jewelry that allows the wearer to identify their illness or allergy and link to their WELLalarm™ account.

In the coming weeks and months we will be launching many fabulous new features that take WELLalarm  far beyond its  core  emergency capabilities. Through your WELLalarm account email, voice, and text alerts, you will be able to store and interact with your health records, appointment schedules, emergency contact information and more -- in multiple languages!

Like many great ideas, this was born out of necessity. Three years ago, shortly after being diagnosed with a rare neurological disorder which required  intensive infusions treatments and chemotherapy, I was urged to start wearing a medical alert bracelet in case of emergency. However,  I was dismayed to see how unattractive the medical alert jewelry was and how inefficient they were in conveying the necessary information in an emergency I also realized how difficult it can be to manage your medical records, juggle medications, and keep track of appointments. Seriously, it is a full-time job unto itself.

What if someone started making stylish medical alert jewelry? What if someone made better use of the latest communication technology? Why shouldn't that person be me? After all, given my background in healthcare, mobile tech and venture shouldn’t it be me???

Dealing with this new chronic illness was enough of a challenge, but starting a new company gave me a reason to fight harder. As a former Aetna executive I was uniquely qualified to start a company like this. And now here we are! With the help of my able and talented team WELLalarm™ is now a reality.

By the way, I have to mention that the WELLalarm™ team is comprised almost entirely of women. Isn't that fabulous?

*Please note you need a beta code to access the account portion of the website or to checkout in the e-store.  You can sign up to be part of the beta at WELLalarm.com. We will be sending out invites to participate in the beta on a first come, first serve basis from this list in the coming weeks! We are really excited to get your thoughts and feedback so please do not hesitate to sign-up!

Stephanie's Story

Okay, after much request...I am posting an updated version of my first post "To the Journey" which includes the evolution of my new company, WELLalarm™. WELLalarm™ will be launching next month and I will be discussing it a great deal more during the next few weeks so please stay tuned!

In the meanwhile, please sign-up for our pre-launch contest!

Stephanie’s Story

If I have learned anything in the past few years it is that life is all about the journey, not the destination.

Of course, my case is extreme with extraordinary circumstances. I developed CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), a serious and potentially life threatening illness at age 28 which caused life as I knew it to come to a screeching halt. I was forced to stop working just as I was hitting my stride, and in many ways, stop living. All of my energy was focused on receiving these intensive and life saving treatments

When I first was diagnosed, many people gave me advice on how to hide my illness, who I should or should not tell, how much to tell them, how not to tell a guy on a date and how to massage my resume. In retrospect, I am not sure what made me feel worse, the fact that I was so ill or the fact that everywhere I turned I was essentially being told that I was no longer normal and that there was something wrong with me that I should hide. Though the nature of disease has changed, our attitudes continue to lag behind.

But my view is that knowledge and communication are our best tools in fighting illness. They are the most effective means of empowering and fortifying individuals, both sick and well. Instead of hiding, I started talking to people and researching every method of communication available on the market for both accessing medical records in emergency situations and easy every day access for everyone. When I realized it was actually more difficult than expected to receive instantaneous information and access to vital health information in emergency situations and after investigating the meager offerings medical jewelry provided, I decided to create my own solution with WELLalarm™. WELLalarm™ allows immediate access to necessary medical information through a multi-pronged internet, voice and mobile solution. The WELLalarm™ solution allows the user to access and control their healthcare information, upload and fax all of their medical records, prescription information, test results, create alerts and appointment reminders. Taking this idea a step further, I also tapped into my background in accessory design to create a modern and sophisticated line of medical jewelry for women, men and children. In addition to having your illness and imprinted on the reverse site, we also offer the option of linking your jewelry to your WELLalarm™ account through a unique WELLid enabling people to access your medical information in an emergency by phone, text and the internet.

Now, at age 32, I am, for the most part, firmly on the other side of the acute portion of my illness. As a result, I want to empower people to take control of their health and wellness in this country and help change the way people view chronic illness.

To the future of living WELL,

Stephanie Cion

To the Journey

As I have thought through this first blog entry over and over in my head, I can’t help but think of that old adage, life is what happens to you while you’re busy making other plans. I certainly had other plans. I had my life mapped out on a nice little path and I was very busy pursuing this path. However, life took over and the ensuing journey has created a myriad of new potential designations. That said, if I have learned anything in the past few years it is that life is all about the journey, not the destination.

Of course, my case is extreme with extraordinary circumstances. I developed a serious and potentially life threatening illness at age 28 which caused life as I knew it to come to a screeching halt. I was forced to stop working just as I was hitting my stride, and in many ways, stop living. All my energy was focused on receiving intensive and essentially life saving treatments. However, I don’t think this realization about life’s journey is limited towards someone who becomes ill. We live in an age where there are many paths, not just the treadmill that we were set on as kids. I hear remarkably similar sentiments from many of my friends. Many of my female friends were raised to be career women, just as I was. We received wonderful educations and competed with our male contemporaries on every playing field. However, many of them are completely torn, unexpectedly, as to what they want from their careers and their lives as they become mothers. It no longer surprises me when someone confides that they have this idea of something else they want to do as they try to marry motherhood and career, and self. This realization is not limited to my friends becoming mothers. At this point, I have lost track of how many friends of mine have reinvented themselves regarding their career.

In spite of the fact that we live in an age where we celebrate individuality and uniqueness, where we pride ourselves on our openness and acceptance, it shocks me as to how much we really do not want to be different. In fact, I often think many of us prefer not to celebrate our individuality, but rather exist in a sea of uniformity. When I first was diagnosed, many people gave me advice on how to hide my illness, who I should or should not tell, when and how to tell my close friends and how much to tell them, how not to tell a guy on a date and how to massage my resume. In retrospect, I am not sure what made me feel worse. The fact that I was so ill or the fact that everywhere I turned I was essentially being told that I was no longer normal and that there was something wrong with me that I should hide. I could not recall doing something worthy of wearing a scarlet letter. As a child, I lived in a world that cared a lot about how things appeared on the surface. I was not prepared to do that again.

Therefore, almost since the beginning of my illness, I have been open and honest with my friends, colleagues, acquaintances and prospective dates about what was going on and this was not’t always easy. I can remember the first time someone shied away from me. I also vividly recall a date that I went on where were having a great time and after a four hour conversation on numerous life topics, I mentioned that I had been ill. He asked several questions which I answered honestly and I will always remember him saying to me, “you shouldn’t have mentioned that right away”. I remember thinking, OK, this guy just told me it would be better to lie than to admit to having been sick. And he was not alone in his advice nor was he the only person that I have encountered who would have preferred I lie to them.

When you think about it, knowledge and communication are our best tools in fighting an illness. They are the most effective means of empowering and fortifying people to fight and win the hardest battles of their lives. However, the societal reaction of how to handle a serious illness essentially compels a person to do the opposite. After all, how can you share information when you are so busy hiding how sick you really are?

Now, at age 31, for the most part firmly on the other side of the acute portion of my illness, I want to empower people to take control of their health and wellness in this country – and how people view chronic illness. The nature of disease has changed since the early 1900’s with the rise of modern medicine. It is no longer acute, but rather it is chronic. This change is the result of many different things, among them, public health efforts in hygiene, vaccines, the introduction of antibiotics and other advances in medication and technology. Today, we have many fabulous ways to treat illness that in previous generations would have proved fatal. The nature of disease has changed, but our attitudes continue to lag behind. This change has created a new phenomena of people who live with their illnesses and are capable of living complete and full lives. Almost half the US population falls into this category at some point in their lives.

I would like to invite you to join me on my journey, hear my musings, and become my confident…and let me be yours. The plan is to share my own experiences with the health care system from all sides, and to take our conversations deeper into how to pro-actively think about your health and wellness. I am happy to go first, but I really hope that you will decide to take the leap and join me! Together, we will become a resource for others trying to find information on specific diseases such as Diabetes, Neuropathy, Epilepsy, Cancer, Autoimmune Illnesses, Hypertension and to spark conversation on wellness related topics including, but hardly limited to: living with chronic illnesses, Holistic Approach to Health care, PMS, and Vitamins. We plan to move forward and also discuss some of the lighter aspects of health and wellness that are a significant part in prevention and living a healthy life as well.

Further details to come…

Hopefully, together, we can start to open the doors to some honest and helpful conversation.

To the journey,

Stephanie