Last week I ordered the USB Flash Drives and they are on their way! All the seminars for Invisible Illness Awareness Week have an audio MP3 file and these will be included on the USB drive.
Some people have asked, “Now, what is a USB drive? In case you don’t know, it is like a mini hard drive and can hold a lot of information. For example, only about 1 seminar would fit onto a CD, but we can fit all 19 seminars on this 1 GB flash drive and half of the USB will still be empty.
You can stick it into your computer’s USB drive and listen; you can download it to your computer, your iPod, your MP3 player, or anywhere that allows you to plugin a USB drive. (My car actually has a USB drive.)
We are selling these for $15 . . . AND, if you watched the first seminar with Wayne and Sherri talking about what to say and not say to a chronically ill person, you just know their booklet “But You LOOK Good!” is fabulous. We would love to help the, get this book into the hands of more people. So if you pre-order by October 15th, we will throw in this book for just 3.50, saving you a few dollars.*
All orders of the flash drive or combination flash drive/booklet, will be sent mid-October, as soon as we receive the flash drives. By pre-ordering you help us with inventory estimations.
So, here is hoping these two items will help you in the coming months. After all, those holidays are just around the corner, when understanding how to communicate your needs with family is vital! Right?
Order today and get both the booklet, “But You LOOK Good!” and the flash drive with all audio seminars for just $18.50, plus shipping.
*This is a limited time offer and coupons cannot be used. Sorry, but we need to break even on our costs.
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CNN Health features a chat based on interest from Invisible Illness Awareness Week, with founder Lisa Copen, hosting.
Thank you for all your help with Invisible Illness Awareness Week. I have some follow up emails set to come out in future days, but this one took priority about the opportunity over at CNN Health.
When we live with invisible illnesses we often say no one understands. They don’t understand the pain, the fatigue, the strength it takes to push through it all. They don’t get our fear of infections, the stress of the bills, none of it.
And we wish the media would do more to cover invisible illness than just show celebrities who seem to be “back to their old life” once they have taken certain medications.
Well, CNN Health is paying attention! Last week they featured your “Images of Hope” from Invisible Illness Awareness Week. I was even asked to write an article for CNN Health on how to talk to one with a chronic illness. And they received over 140 comments in just hours. They listened . . . to you!
This week, in response to the article and the commenters, CNN Health is hosting a chat over at their Facebook page, http://Facebook.com/CNNHealth . It will be this Friday, September 21, 2012 at 9 AM pacific, 12 Noon Eastern. And I will be co-hosting it along with Sarah from CNN staff.
They are giving their readers a forum to discuss what is on our minds. And personally,
I would love for TONS of us to show up.
Now, this is for just 1 hour. I know some of you will not be able to come. If you cannot make it, will you take just a minute to comment on this post, and thank the health editor over at CNN Health, Ashley Hayes, for the opportunity. She is the one making a difference.
Too often we criticize the media. They don’t tell our story, or when they do, we complain that they didn’t tell our story the right way. But they are giving you and I a chance to tell our story–and that is vital.
If they do not hear from us, from people like you and I who live with invisible illnesses, they will not know that there is a story to tell. So, show up if you can. Put it on your calendar–right now. And if you can’t come, comment below.
Every little bit matters–because you–and your story–matter.
Special thanks to Elizabeth Cohen, CNN Senior Medical Correspondent for tweeting out about the chat!
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Sunday ended National Invisible Chronic Illness Awareness Week. I first posted Monday on National Invisible Chronic Illness Awareness Week and included a link to this website . I have read all the blogs posted (70) as of this writing. What I have learned is that I am far from being the only person dealing with this outside my group of friends I have met since my journey began.
I have also learned that there are many “brave” men and women out there trying to carry on with their lives the best they can despite reactions, pain, chronic infections, chronic migraines, and the battle with depression either on its own or as a side effect of their other illnesses. The stories were not much different from mine. Some illnesses I was familiar with or had heard of but didn’t know much about. Other illnesses I had never heard of before which sent me on a quick Google search.
In honor of all those whose stories I have read over this past week, I wanted to share what I learned, and in honor of those whose stories are yet to be told, I say “GOD BLESS YOU” for hanging in there and for not giving up.
I am going to attempt to list all those illness that I read about here today.
Budd Chiari Syndrome (I didn’t know about this ) - a blockage of the hepatic vein which carries blood away from the liver resulting in liver damage.
Chronic Fatigue Syndrome see ME
Chronic Pain (I think this speaks for itself) – chronic pain can be caused from anything from rheumatoid arthritis to injuries from an accident.
Cuada Equina Syndrome (CES) - (One of so many illness that I was unaware of) - this is a rare disorder that affects the bundle of nerves roots (cuada equina) at the lower (lumbar) end of the spinal cord.
Cystinosis (another illness I was unaware of) - a rare genetic disorder that causes an accumulation of cystine, an amino acid, within cells. This causes crystals to form and build up damaging cells. The crystals can affect many systems in the body especially the kidneys and eyes.
Depression – this can be hard enough to deal with but could also be a direct result of any of these conditions.
Diabetes (something most people know about but it makes sense that it would be an invisible illness)
Dysautonomia or also referred to as POTS (I have heard this a lot among fellow EI and MCS sufferers) -This is a broad term that describes any disease or malfunction of the autonomic nervous system (ANS). The autonomic nervous system controls heart rate, blood pressure, digestive tract, and sweating among others. Some with dysautonomia are affected mildly while others can be left bed-ridden.
Ehler’s Danlos Syndrome (I had never heard of this before) – A group of disorders marked by loose joints and hyperelastic skin that bruises easily.
Endometriosis (I learned I had Stage IV while a hysterectomy was performed due to extreme hemorrhagic ovarian cysts and the possibility of ovarian cancer) - cells in the lining of the uterus grow outside the womb and attach themselves to other organs causing pain, sometimes debilitating pain.
Environmental Illness/Chemical Sensitivity (This describes me) - a controversial condition where slight exposures to a chemical or group of chemicals can cause a wide array of symptoms from severe headache and brain fog to neurological reactions and respiratory symptoms.
Fibromyalgia (I have this but not nearly as severe as others I know) - a common syndrome in which a person has long-term body pain and tenderness in the joints, muscles, tendons and other soft tissues. It has also been linked to fatigue, sleep problems, headaches, depression and anxiety.
Food Allergies (I have this as well) - An allergy to many foods. Reactions can vary from rashes and hives to anaphylaxis.
Glycogen Storage Disease or GSD (something I was not aware of) - An absence or deficiency of on of the enzymes responsible for making or breaking down glycogen in the body. Depending on the type of GSD a person has, their enzyme deficiency may be important in all parts of the body, or only in some parts of the body, like the liver or muscle.
Graves Disease – a thyroid disorder that leads to the overactivity of the thyroid gland.
Lupus Systemic lupus erythematosus (SLE) - an autoimmune disease which means the body’s immune system mistakenly attacks healthy tissue which leads to chronic long-term inflammation.
Lyme Disease (this is something that is finally making more headlines) – caused most predominantly by the deer tick. Left untreated, later symptoms may involve the joints, heart, and central nervous system.
Migraine - a chronic disorder characterized by recurrent moderate to severe headaches. Symptoms include nausea, vomiting, photophobia and phonophobia.
Myalgic Encephalomyelitis (I have heard this in terms of Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome) - is used to designate a significantly debilitating medical order or group of disorders defined by persistent fatigue.
Mycotoxicosis (another diagnosis of mine) - refers to the poisoning from exposure to mycotoxins. The symptoms depend on the type of mycotoxin, the concentration, and the length of exposure. Age, sex, and health also are determining factors in symptoms. Mycotoxins can potentially cause acute and chronic health effects from ingestion, skin contact, and inhalation. Some of the health effects found in animals and humans include death, identifiable diseases or health problems, weakened immune systems, allergens, or irritants.
NASH or Nonalcholic steatohepatitis (I had never heard of this disease before) - is a common often “silent” liver disease. It resembles alcoholic liver disease but occurs in those who drink little or no alcohol. The main feature is fat in the liver along with inflammation and damage.
Parasitic Infections – Many different parasites (including that which causes Lyme) can cause devastating effects on the body. Some I have read about during National Invisible Chronic Illness Awareness Week are Babesiosis, Bartonella and Ehrlichiosis.
POTS Postural orthostatic tachycardia syndrome is a condition of dysautonomia (see above). A change from lying to standing upright causes an abnormally large increase in heart rate.
PVC or premature ventricular contraction (another invisible illness I had never heard of) - may be perceived as a skipped beat or felt as palpitations in the chest. They are extra abnormal heart beats that begin in the heart’s lower chambers or ventricles causing insufficient circulation.
Rheumatoid Arthritis - a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs.
Sarcoidosis (A friend once told me she had been diagnosed with this) - Sarcoidosis is a disease in which inflammation occurs in the lymph nodes, lungs, liver, eyes, skin, or other tissues. The cause of the disease is unknown. Sarcoidosis can affect almost any organ of the body, but it most commonly affects the lungs.
Sjogren’s (again this was something I had heard about bud didn’t know anything about) - a chronic autoimmune disease in which white blood cells attack their moisture-producing glands. Most known symptoms are dry eyes and mouth but may also affect other organs such kidneys, blood vessels, lungs, liver, pancreas and the central nervous system. Another piece of information that I wasn’t aware of is that is one of the most prevalent autoimmune disorders and 9 out of 10 patients are women.
Wegner’s Granulomatosis - a rare disorder in which blood vessels become inflamed, making it hard for blood to flow. It mainly affects blood vessels in the nose, sinuses, ears, lungs and kidneys. It is thought to be an autoimmune disorder.
I had never heard of National Invisible Chronic Illness Awareness Week until a week ago. What I learned is that I am so glad that there is a venue where we can gather to tell our stories. I was amazed at how many of us are blogging about our illnesses and the number of illnesses that I had not heard of before or had even thought of as being an invisible illness. I have chosen to follow some of these blogs to keep up with the progress of others.
Kathryn Treat is the mother of two. She was a stay-at-home mother who decided to return to the work force in 1999 when her younger daughter was about to graduate from high school. Shortly after returning to work she began getting sicker and sicker and discovered that she was being exposed to mold in her workplace. After battling the workers’ compensation industry for years, she decided that she needed to write her story to let others know that mold indeed can make one sick. She is in the process of preparing her manuscript for publishing this fall. She also started a blog http://allergictolifemybattle.wordpress.com where she includes excerpts from her book and discuss things she has discovered, including what it is like to live with environmental illness (also known as multiple chemical sensitivity) and food allergies.
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Join Lisa as she talk about how it can “feel” to go to a “virtual” conference. How Invisible Illness Awareness Week impacted others, what she hopes you will take away from this week and more. She is interviewed by her husband, Joel.
Wondering what the “headquarters” for Invisible Illness Awareness Week looks like? Lisa takes you on a 3-minute tour of her home office.
Lisa was diagnosed with rheumatoid arthritis at the age of 24, in the midst of a typical life, finishing college and discovering where her passions resided. In less than a few weeks she went from significant pain in her feet to her entire body flaring. After changing doctors, searching for answers, she was diagnosed short thereafter. She has never been in remission and her rheumatologist has said that 80% of her pain is due to deformity.
She began Rest Ministries in 1996 after searching for a place where she could share her faith. Through this she has found her true purpose in having the opportunity to speak and write, encouraging others through whatever she pursues. She has written various books including Bible studies, and How to Start a Chronic Illness Small Group Ministry.
Lisa considers every day precious. She is a survivor of the flesh eating bacteria in 2008 and had four joints replaced in her left hand in 2009. Despite her daily pain and fatigue, her 9-year-old son keeps her going. She lives in San Diego with her husband and son and deals with insomnia by working at 3 AM.
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Marriage can be difficult. Add into that the tension of a spouse living with a chronic illness and it’s a perfect storm for stress building. But you can find skills to help communication in marriage. What are some ways you can more effectively communicate with your spouse? How can you make sure each person feels as though they can share? How can you find a balance between what you share with your spouse that is helpful, versus what is overwhelming? How do men and women communicate differently? Pam addresses all of these and more and will leave you nodding in agreement, “Yep! That’s us!”
About Pam Farrel
Pam Farrel is a challenger, cheerleader and coach. With her husband Bill, the Farrels are international speakers, and authors of over 35 books including best-selling Men Are Like Waffles–Women Are Like Spaghetti: Understanding and Delighting in Your Differences
They are relationship specialist and seek to help people become “Love-Wise” Pam has a heart for women, first as a mentor and youth pastor’s wife, then serving for 15+ years as Director of Women’s Ministry alongside her husband, Bill, a senior pastor. Now the Farrels speak full time for women, men, couples, singles, and families and are frequents guests on radio and TV.
Pam is also a sought after women’s speaker encouraging women from her books: Woman of Influence, Woman of Confidence, 10 Best Decisions a Woman Can Make, and Devotions for Women on the Go! Her newest are 52 Ways to Wow Your Husband, Raising a Modern Day Princess, 10 Secrets to Living Smart, Savvy and Strong, LOL with God, and Becoming a Brave New Woman.
Pam has experience as a radio show host, Director of Women, pastor’s wife, and mentor. She is also the founder and President of Seasoned Sisters, a ministry to women 40-65. (www.seasonedsisters.com)
A few of their books include: Single Men are like Waffles, Single Women are like Spaghetti, The Marriage Code, Red Hot Monogamy, Why Men and Women Act the Way They Do, Love, Honor and Forgive, and 10 Best Decisions a Parent Can Make, 10 Best Decisions a Single Can Make, and 10 Best Decisions a Couple Can Make (Harvest House).
Pam is a mentor to numerous authors and speakers, nurturing leaders through her Circle of Influence program. Pam is a busy conference speaker for women’s events including speaking for over 12,000 moms at Hearts at Home, and more intimate groups, like pastor’s wives or leadership events, business seminars, military wives, church women’s retreats and conference center venues.
Both Bill and Pam travel globally to encourage audiences, together as well as solo, most recently to Singapore, Canada, Korea, Mexico, and Germany. They have been happily married for 32 years and are parents to three children, and two sons are married so their family now includes two daughters-in-laws and two small granddaughters and a new grandson. The Farrels live in San Diego, CA.
Some of Pam’s books: Woman of Influence: Ten Traits of Those Who Want to Make a Difference, Woman of Confidence: Step into God’s Adventure for Your Life, 10 Best Decisions a Woman Can Make, and Devotions for Women on the Go! Her newest are 52 Ways to Wow Your Husband: How to Put a Smile on His Face, Raising a Modern-Day Princess, 10 Secrets to Living Smart, Savvy, and Strong, LOL with God: Devotional Messages of Hope & Humor for Women, Becoming a Brave New Woman: Step into God’s Adventure for You.
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Do you ever grow weary of how the media portrays your illness (if they even do)? Does it ever feel like they are sugar-coating the disease and the reality of it? How about when the doctor describes your illness as being more of an inconvenience than a life-changer? What can you do in these situations? How do you keep a sense of humor? When do you let it go, versus stand up for what you believe? Kelly will describe some of the ways she copes with illness and the misportrayal of her illness, among others.
About Kelly Young
Kelly Young is a patient advocate providing ways for people to be better informed and have a greater voice in their healthcare. She received the 2011 WebMD Health Hero award for her work with Rheumatoid Arthritis (RA) patients. Through her writing, speaking, and use of social media, Kelly stays busy helping others to become more aware of Rheumatoid Disease; advocating to the medical community for patients’ needs; creating opportunities for patients to connect and empower themselves.
In 2009, Kelly created RA Warrior.com, a comprehensive website about RA of about 700 pages and the hub a large, vibrant patient community. She also writes periodically for professional newsletters and websites including Healthcare Professionals Live and The Rheumatologist. Kelly serves on the Mayo Clinic Center for Social Media Advisory Board. Kelly has consulted for industry professionals and CME projects.
Thousands have enjoyed her YouTube channel’s realistic Public Service Announcements which that RA is not just “arthritis.” There are about 16,500 friends on her informative and friendly Facebook Fan Page. She moderates a weekly Twitter-chat on rheumatology topics, which can be followed with the hashtag she created: #rheum.
Kelly is the founding president of the Rheumatoid Patient Foundation (RPF) the first non-profit which exists solely to improve the lives of Rheumatoid patients. Through the RPF, she has initiated projects and built relationships which will expand understanding of RA and improve care for patients. It is her passion to see that there will not be another generation of Rheumatoid patients who suffer the same way past ones have.
Kelly is a mother of five who has homeschooled for 18 years. She has lived with unrelenting Rheumatoid Disease for six and a half years. She shares love and hope with others, grateful for God’s help to use her illness for good.
At RAWarrior you will find 700 free articles w/ the best information on RA online, served up in a hopeful and encouraging voice and a free monthly newsletter.
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If you or someone you love is a teenager with illness, you will find Naomi is a wonderful encourager to you. But even if you are not a teenager, you will find this young woman wise beyond her years and a real inspiration when it comes to living with an invisible illness. She discusses the journey of being a tween with an illness to teenager, and then through college and career. Hear her tips for those with illness for going to college and career aspirations.
Naomi Kingery, also known as The Diabetic Diva®, was diagnosed with type 1 diabetes a decade ago. Kingery made a decision to begin to help others embrace their chronic illness as she learned to do the same while growing up with diabetes.
Through the years her work in the diabetes community has included being the author of The Sugar Free Series, a blogger, and a Diabetes Advocate. She also currently working as an employee for Medtronic and is attending college for a degree in Kinesiology.
Naomi’s books are all from “The Sugar Free Series” (1 paper back called SUGAR FREE ME and 2 eBooks called Sugar Free Teens: The Diabetic Diva’s 5 Tips on Reaching Your Potential and Sugar Free Support: The Balance of Supporting Your Diabetic Through Every High and Low. She is working on the last book in the series.
Books are available online through Amazon and Barnes and Noble but direct purchase links are available on her website.
On her web site, Live to Love Diabetes you will find a weekly blog where she documents what it is like to live with diabetes; her yoga Cd-Rom and DVD; A list of media resources that have shared Naomi’s story, including previous radio interviews for Invisible Illness Week.
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As we wind down the week we have some great speakers for you. Naomi Kingery will be sharing her journey with diabetes from a “tween,” through teens, college and career. Pam Farrel shares about communication in a marriage and how it really are the little things that can matter the most. And then Kelly Young (@rawarrior as many of you know her) shares about the frustrations we sometimes feel when the media or doctors and such sugar-coat our illness. (“Why can’t you go run a marathon now that you are taking that medication–like the girl on the commercial?)
At 5 PM pacific I have prepared a 30-minute video for you as our closing seminar as I share about the week, what I hope you have taken away from it and more. I even have a little video giving you a tour of my office so you can see the “home-base” of Invisible Illness Awareness Week. And guess who interviews me? My husband!
A few things worth noting:
First, just a reminder that all of the videos will stay here--so come listen to them anytime. Or if you listened to one this week, and you are now trying to put things into place that the speaker suggested, remember it’s still here to come back and listen to again if you need refreshed.
Secondly, yes, we will have all the audio files available on a flash drive. We will have this available to order in our store soon (they should arrive early October.)
And lastly, this has all been a work of my heart. I am exhausted (smile) and can barely type today I am so sore, but it was worth it. If you are in the position to give any financial gift, please know it will help us cover the costs of this event. We have not received any donations or any funds whatsoever to pay for this. I have done as much of the work as I can such as the website, social media, and all of the videos. And I am a full-time volunteer. So, if you are able, know how much it means to me.
I hope you will join us today. Our Friday speakers have waited anxiously to have their seminars broadcast, so make sure to drop by at some point today.
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Is anyone out there?
One challenge that I particularly face, especially when one considers it is a rare condition–is simply by trying to find an audience for my blog. Again, as I have previously mentioned it is not a common condition with very little information on the Internet or in medical books and have not yet met anyone exhibiting the same condition as myself. As a result, I often wonder if anyone reading my posts can relate to them or if they are relevant to other conditions.
Many of the symptoms are general, such as the dizziness and vertigo can be applicable to many different conditions, and the spastic paraparesis is itself a symptom and can be found in patients with multiple sclerosis and Parkinson’s Disease. But still the question remains whether my blog is helping and making a difference to others. Do I have something of value to add and share with whole health community?
I am too tired to write
The second challenge is being able to keep up with the writing and health activism whilst feeling so very unwell. A lot of the time, I really feel so unwell that the last activity that I feel able to take part in is by going on the internet, and writing or taking part in some other activist related activity. Us health activists need to attempt to learn to balance our lives. Health activism is so important, it often gives us something to focus on besides our illness, and advocating for ourselves and others is an excellent approach to doing just that at, however, it is also important that we take time for ourselves and give ourselves a chance to recuperate when symptoms are bad and to rest as much as possible.
The challenge of educating those who are well
And the third challenge that I personally face, as a health activist is to effectively make people aware and to understand the challenges that patients with an invisible chronic condition face everyday, to let them know that although we make look well, that it is not always the reality.
And in addition to make others aware of the language that people often use around those with invisible chronic conditions – that they are not often useful or helpful and can be really hurtful. Some examples of things not to say to a person with an invisible chronic condition are:
“It’s probably just stress” – this undermines the severity of the symptoms being experienced; as if the person is exaggerating their symptoms as well as undermining the diagnosis given by a qualified medical practitioner
“It’s all in your head” – this can be really undermining and hurtful for someone with an invisible chronic condition; just because you are unable to see the problem does not mean that it doesn’t exist
“You’ve made it! You must be feeling better” – this fallacy is one that I get a lot and can be really infuriating. For my condition and many others there is no quick fix or even a cure and hearing tis proves that invisible chronic conditions are completely misunderstood and no effort is even being made to understand by others. For myself, I often try to make an effort to visit someone for their benefit as well as my own, often the worst thing to do is stay in and feel unwell and often like to leave the house to get fresh air and to have social contact with others
“Everyone experiences that” – I often get this directed towards the dizziness that I constantly suffers and feel that it often minimises the effects of the dizziness, yes, a lot of people experiences dizziness, but it many not be of the same severity that mine is, and often is not felt constantly as mine is.
And there are many more! Can you think of others that people say to you which are not helpful? Please share them with us and perhaps I can do a follow-up piece on the topic!
Rhiann Johns was diagnosed two years ago with what is called a long-standing brain stem lesion and spastic paraparesis. This basically means that she has scarring on the brain stem which, for her, causes chronic dizziness with frequent episodes of vertigo with visual disturbances. The spastic paraparesis causes stiffness and weakness in the legs, making it uncomfortable when walking and means that she is unable to stand for very long. Although, she was only diagnosed 2 years, she has had this since she was born, although the doctors are unsure of how it happened. Although, she has always had problems throughout her childhood and teenage years, she was able to still gain a BSc Psychology. Recently, her condition has deteriorated a lot.
She blogs about it frequently at My Brain Lesion and Me
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Have you ever wanted to be more of an advocate for your disease, or even just all people who live with a chronic condition or disability? Does the idea of being an advocate appeal to you, but it seems overwhelming? Where do you start? Jennifer explains how she had become an advocate in her college, workplace and community–all while fighting various illnesses and fatigue–and how you can too.
About Jennifer Pettit
Jenny Pettit is an auditor by day and health activist by. . .well. . . day, night, and any other time she can fit it in. First diagnosed with invisible chronic illnesses over a decade ago, Jenny has spent the years since reshaping the world around her. With experience developing programs for everyone from college students to corporate leadership, she’s happy to share what she’s learning.
The typical person being diagnosed with the autoimmune disease Sjogren’s Syndrome is a woman in her 40s. Jenny was diagnosed as a high school sophomore at 15. She believes being diagnosed with a progressive chronic illness so young coupled with the lack of familiarity her community had with Invisible Illnesses is what propelled her into activism. Her additional diagnoses, including Fibromyalgia, Dysautonomia, and more, only add to her conviction that people with Invisible Illnesses have many experiences and needs in common.
Jenny wants to leverage these common experiences to achieve three goals: raise awareness, connect patients with each other, and help them find the resources they need. Modern e-patients put a lot of effort into self-education and research, but each person is creating their own wheel. Imagine how much more we could accomplish – and how much faster we could do it – if we used each other’s wheels as a framework upon which we could build.
Through her grassroots organization UII – Understanding Invisible Illnesses, Jenny works with the different communities in our lives to achieve these goals. From local parishes to colleges to national (and international) companies, UII and Jenny are using social media as well as live programs to change the way our communities perceive and respond to people with disabilities. Her work has earned her several recognitions including KPMG LLP’s new Chairman’s Award for High Performance.
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