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This post was sponsored by Novartis.

It was my final year of college and, like any senior, I was looking forward to graduating, celebrating with friends, and getting started with my career. I was 21 years old when all of that changed.

I first noticed bruises all over my body. I didn’t know what was wrong, so I went to my primary care doctor for testing, thinking it would be a minor issue. Later, my doctor called. With fear and uncertainty in her voice, she told me my platelet count was extremely low and that I needed to see a hematologist immediately — it was an emergency. With the results we were seeing, the hematologist thought it was chronic immune thrombocytopenia (cITP), but he had to rule out other diseases because cITP is a diagnosis of exclusion. From what I have since learned, my situation was unique in that I received a diagnosis fairly quickly, whereas other patients often can be misdiagnosed or face a long road to diagnosis.

After I was diagnosed, I learned cITP is “a rare autoimmune disease where platelets don’t function properly. Platelets are the blood cells that allow the blood to clot and keep blood vessels intact, and platelet levels that are very low can result in dangerous internal bleeding and bruising.”

For me personally, the most difficult part of living with cITP has been its impact on my schedule. From the amount of time I devoted to getting blood tests, going to the doctor and waiting for test results, coupled with the symptoms of the disease, learning to live well with cITP was incredibly challenging. In college, while my friends were out socializing and enjoying the last few months of our final semester, I spent most of my free time at the doctor’s office and adjusting to the difficulties that come with this disease.

The emotional roller coaster, fatigue, and interruptions to life that accompany cITP can be scary and frustrating. As someone living with this disease, I encourage healthcare professionals managing cITP to learn as much as they can about how the disease affects their patients’ lives. It’s important that practitioners understand the full impact of the disease and can ensure their patients have the resources they need.

My advice to anyone diagnosed with cITP is to make sure you have a support system to lean on — whether it’s your family, friends or the advocacy community. Work with your healthcare team to gather as much information as possible, which will help you understand all of your options, and seek out the support of advocacy groups. When it comes to cITP, there’s no truer saying than “knowledge is power.”

To learn more about ITP, visit MyITPLife.com.

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Having chronic health issues can leave you feeling down about your body and, for many people, like your life is on “pause” while you fight your illness. Debbie Gibson is hoping “Dancing With the Stars” will help her get her her “joy back” after years of struggling with Lyme disease.

The singer told Entertainment Tonight on Wednesday that after years of health issues due to Lyme disease, she hasn’t been “friends” with her body and she joined “Dancing With the Stars” to help her get back to the life she had before.

“It’s time to make friends with my body again and get the joy back and performing consistently because I’ve been kind of [been] home resting, and resting, and resting,” Gibson said. “Which is helpful but it’s time to get moving and it’s time to overcome this thing once and for all.”

She said the show has already given her daily accomplishments to be proud of, she hopes the show will help pull her out of feeling “stuck” and “sidelined” in her life due to her health issues.

“I’m ready to get unstuck and I think this is the way. It’s the way to do it,” she said.

In 2014, Gibson revealed she had been diagnosed with Lyme disease the previous year after people criticized her thin appearance. In a blog post on her website, she explained that she felt flu-like symptoms, cognitive challenges, pain and food sensitivities for months as she went from doctor to doctor trying to get a diagnosis. She finally discovered she had Lyme disease after a GI doctor ordered her a test.

“By this point, my cognitive thinking had been affected… my sense of direction, sleep, moods, stamina, muscles and joints. And, I had this sunken in look and dark circles under my eyes,” Gibson wrote. “All the times you saw me on Vine, Twitter, Facebook, Instagram or YouTube laughing and singing, I used concealer to cover that up and pulled from my reserves to bring you my best.”

Later that year, Gibson revealed that she was feeling better after being treated by a Lyme-literate doctor and taking antibiotics.

“I’m taking things day by day,” she told People. “I get into trouble when I look too far ahead and worry about the future. I’m now grateful for each day. This whole experience has taught me a ton of life lessons.”

“Dancing With the Stars” premieres on September 18 on ABC at 8/7c.


Sean was born with Down Syndrome. His struggle to speak has been a long, arduous journey — diagnosed with  Apraxia of speech and a Phonological processing disorder due to being deaf in his right ear and hearing loss in his left ear — he couldn’t even hear sounds the right way from the beginning.

As a baby, we taught Sean sign language — uncertain whether he would ever speak, or be able to speak clearly enough for anyone to understand his words.

Speech therapy and Occupational therapy for oral-motor exercises were a constant reality for Sean. A palate expander for a high and narrow palate followed by three rounds of braces landed Sean with articulation that our family and close friends could decipher; but I still had to translate everything he said for strangers because they couldn’t understand his words. I likened it to listening to a person with a foreign accent. After a while, you learn the ways they pronounce words and can understand better their patterns of speech. We joked that Sean spoke his own language; we said he spoke “Seanese.

Sean wanted to be on Television from a young age. He performed onstage starting at age 3 in singing and dancing groups, church and school choirs. He took drama class in intermediate school and unfortunately the high school drama teacher wouldn’t give the recommendation that Sean needed to continue past Drama 1 to Drama 2 or Musical Theater classes. But that didn’t dissuade Sean. After high school, he enrolled in community college classes and continued honing his craft. But his articulation continued to be a struggle.

When he was 18, I drove him to an audition for a new sitcom being produced by Ryan Murphy. The lines were hysterical –especially coming from someone with Down syndrome. But as he delivered the lines — his timing and expressions spot on — I couldn’t even decipher what he was saying, so I knew the casting director couldn’t understand him either.

On the drive home, Sean was confident he would be cast in the role. I had to be honest with him, “I don’t think so. I couldn’t understand your words, and if I couldn’t understand them, I know they couldn’t, and the scene is way too funny for the audience to not be able to understand what you are saying.”

Sean thought silently for a few minutes then asked, “Will you help me?”

 

From that day on he would check in after a lengthy sentence, “Was my speech clear? Did you understand me?”

Sean allowed his father and me to repeat and correct his mispronunciations. These exercises were very meaningful for Sean, he wanted to work hard to reach his goal of being on TV, and this was more significant than the drills of speech therapy. Because of verbal Apraxia, Sean needs to hear any new words around 100 times before he can properly imitate them. This is why he called the dice game “Craps,” “Cramps.” And his “HUD Voucher,” “Head Basher.”

Sean’s hard work paid off and his dream of being on TV came true when he charmed the cute young women who were the casting directors for “Born This Way” on A&E.  

Sean wearing one of his shirts that reads, "Determination is on the 21st chromosome"

Sean continues to work on his articulation. And when we understand him, he is the funniest person I’ve ever met. Now with his new business, others can enjoy his comedic comments embossed on t-shirts, mugs, hats and bags. Many of the sayings aren’t new to the Urban English language dictionary. But when Sean delivers them, I can’t help but laugh. And I hope it isn’t lost on you that less than five years ago he was unintelligible, and today we celebrate his speech by immortalizing it on swag.

Editor’s note: This story has been published with permission from Sean, the author’s son.

Learn more at Seanese.com.

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Most of the articles I write come from a pretty personal place – often spurred by some moment or incident where I thought, “Gee, someone else may be going through that. Maybe I can help them.”

Well, today I went out during a flare with my cane to get hot wings for my fiancé and the server asked me how sick I was and if there was a cure, all because I had a mobility device. Not having used it for a few weeks, I had forgotten what it felt like to walk around without it and to be able to feel invisible in a crowd of people once again. With a mobility device of any kind, you tend to stand out like a sore thumb, and there are always those people who love to ask ignorant questions, well-intentioned though they usually are.

woman standing outside with her walker

I remember being with a wheelchair attendant at the airport once who told me about how she had a friend with lupus who had just died at the age of 30. I sat there unable to move (being wheeled about by her) listening to this thinking, by god, this is what I have to fear and think about next when I can’t sleep at night. People aren’t just asking about the cane anymore, but are essentially telling me I might die.

I’ve had people ask when I will die, too, and tell me they know for a fact my life expectancy is shorter because I have lupus. This of course spurred an all nighter of agonizing WebMD-ing and Google searches, which made not only myself but my fiancé (and dog too, probably) upset over the “what ifs” and the “how do they know” and the “will this/won’t this happen,” which nobody truly knows the answer to.

I am not an expert at handling insensitive passerby or people in general. I am an expert, probably just like you, at meeting them on the street and being unsure of what to say that will be a kind balance of standing up for myself and my life as well as answering their questions in a polite but firm way.

I have learned the best thing to do is be kind and to rise above it. Tell them about a successful venture or thing you have recently done or are working on, a talent you have, something you love to spend your time doing – something outside of your illness. Use the moment as an opportunity to teach that person that people can be more than their illness. Try to remember this may be the first time that person has encountered a person who is ill, like yourself, and they genuinely don’t know a better way of showing their concern than being how they are in that moment.

Someone I respect very much always says to look at a person’s intent, not their actions – so, unless someone is openly making fun of you, it is best to err on the side that they didn’t want to upset you and had your best interest at heart. I know this doesn’t make it easier to take things less personally, but that part is on you (and me) to handle, just like it is to learn to handle the stranger who has a million questions. If you learn some strategies, it may become easier in time.

That same person also tells me to have “answers on deck” for ignorant people who ask me these questions, so I can exit quickly and feel in control of the situation, and not so taken aback and upset or thrown by their remarks as I am if I haven’t thought briefly about what to say if someone were to ask. Sometimes I’ll get asked a few times in the same day – and people who have an illness or mobility device know how that can make you feel if you are’t prepared or ready to deal with it. It can really ruin your day!

woman posing with her cane which has skulls on it

My answers? Depends what they ask. Sometimes they ask how old I was when I got sick. That really hurts. Sometimes I tell them, sometimes I don’t. I typically tend to say I have lupus. Some people will then ask what it is or if there is a cure, and I say I am doing well, but there isn’t. Still, I am positive and will be fine, thanks for asking. Then I change the subject in hopes they will give up. I change the subject to how I am busy writing and just came in to order x or y, and how was their day? And then they usually say, “Oh, how lovely!”

You are in control at that point, and can keep changing the subject or evading answering questions or leave the area. You also don’t have to answer any questions at any point from when they started asking. “No” is a full sentence. Remember that. Have answers prepared for “not answering” at all if you don’t want to.

It can be a real downer to run into people who ask or probe or have their own opinion about your illness (and how to treat it), but remembering they just want to help is what’s important. I try to remember too that people who are nasty (the really nasty ones), like bullies in high school, are most often mean because something hurts inside themselves. Aside from this, people who are just asking but doing it the wrong way are doing the best they can, and it is up to us to teach them and the rest of the world about us and our illness if we want to change their opinion.

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Raven Walton has never been shy about discussing her gastroparesis and gastric neurostimulator (also called a gastric pacemaker) as she’s competed on “Big Brother” this summer. So when former “Saturday Night Live” actor Bobby Moynihan stopped by the house to meet the contestants and host the Power of Veto competition, Walton gave him a peek at her pacemaker — and Moynihan responded with a joke that had viewers talking.

On Wednesday night’s episode, Moynihan surprised the contestants at the house and told them he’s a huge “Big Brother” fan and would be hosting the veto competition. He asked them to show him around the house and spent a few minutes chatting with the group.

At one point, Walton lifted up her shirt to show him her pacemaker. Moynihan smiled and laughed, saying, “First thing you have to see, everyone who comes in the house.”

In the Diary Room (where contestants go to talk privately to the camera), Moynihan cracked, “The second I meet Raven, she shows me her pacemaker. Maybe lead with a handshake?”

Watch the moment below:

Gastric neurostimulators are battery-operated devices implanted under the skin that deliver mild electrical pulses to the stomach muscle wall. Some patients with gastroparesis, a chronic illness in which stomach muscles don’t function properly, find that gastric “pacemakers” help their nausea and vomiting.

Viewers shared their reactions to the moment on Twitter, with some finding the moment shocking, inappropriate, or funny.

Moynihan’s comment, and viewers’ reactions, reflect the criticism Walton has been receiving since she entered the house: that she’s exaggerating her illness for attention and sympathy. However, others have appreciated the awareness Walton is bringing to gastroparesis and pointed out that it’s impossible for viewers to know all the details about her illness.

Photo courtesy of the Big Brother Facebook page


I can’t remember what “normal” feels like. I can’t remember what it feels like to not be in pain, what it feels like to not be severely fatigued all hours of every day. I don’t remember what it feels like to eat a meal without taking eight or nine different medications, what it feels like to be able to run, or do anything I please.

All I know is running out of breath walking down the hallway or using a wheelchair on bad days when my body just can’t support itself. All I know is constant pain in, varying degrees of pain in different parts of my body, with no way of predicting what might hurt the next day. All I know is cramping fingers after five minutes of using my pencil, while doing homework, or being forced to request due date extensions because I got sick. All I know are my diseases.

But yet, no one sees this part of me. While all I know is pain, all people see is a “healthy” 17 year old girl. They can’t see the pain, they can’t see the constant exhaustion in my muscles. In the minds of a bystander there’s no reason why a teenage girl should be in a wheelchair without a leg cast.

On bad days I put on a face. I can smile. I can laugh. I can appear “normal.” In fact, I’m quite good at that. Only those very close to me can tell the difference between my act and the real deal.

Why do I put on an act? What is my reasoning behind it? I’m scared to open up.

I want to, but I’m scared. I’m scared of how people might react. I’ve been rejected by three different doctors and many people, who claim it’s nothing and simply all in my head… so why should other people react any different? I can’t handle one more person not believing in me. And not only am I scared to death of reaction, but I don’t want to deal with the awkwardness and the embarrassment of explaining my illnesses and the affects they have. I hate the awkward silences or the blunt explanation of my conditions. And I don’t want the guilt of feeling like a burden to my friends once they know of my limitations. I’m more prone to simply bottle it up and push through my pain, no matter how excruciating, simply because I’m scared, embarrassed, and constantly feel like a burden.

I desperately wish that I could be open about it. I wish that I could just be myself with people I love and be vulnerable with them. I wish that I could be comfortable around others, even if I’m in pain, and not have to worry about covering up my fatigue and pain for their benefit. I wish that I wasn’t scared to be real with people. And maybe it’s partly my fault. Maybe the people around me are willing and waiting to love me and be there for me and allow me to be myself, but I’m too scared to give them a chance. Maybe there are faults on both sides.

But, when I do let people in and allow myself to be open and vulnerable, I’m worried I’ll be perceived as nothing but a sob story. Yes, I want them to understand that my life sucks. I want them to understand that I’m in constant pain and that most of the time I have a really hard time just getting through each day. But, I also want them to understand that I’m still me.

The writer of this article, sitting on a tree stump.

Despite all of the pain, hardships and grief that I have to go through, there are times when I’m still the happy go lucky girl I’ve always been. I’m still passionate about sugar (even tho I can’t have it anymore), and I still worry about what I’m going to wear the next day. I still love to eat pizza, I still love to read books and binge my favorite TV shows. I still like playing or cuddling with my puppy. I still enjoy singing and playing my guitar and ukulele. I’m still in love with my piano. I’m still the dorky girl I’ve always been, except now I’m chronically sick.

When you find out about my illnesses, please understand that I do have very difficult days when I can’t even get out of bed or do my homework. Sometimes I’m even in pain, crying all day. But, also understand that even though I have changed, I’m still a girl who has hopes and dreams like everyone else.

I’m still me. I’m just sick me.

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