Every Story Counts

By Rachel Sircy

online-marketing-hIgeoQjS_iE-unsplashI know that I’ve written many times about how celiac disease affected me before I was diagnosed. The symptoms were all over the place, and no doctor seemed to be able to put the clues together to come up with what was wrong with me. I experienced no digestive issues for most of my life. The symptoms were mostly things like forgetfulness, inability to concentrate, joint pain, and debilitating fatigue. I developed stomach and intestinal issues during my late high school and early college years. It was only after the gastric symptoms – the bloating, the reflux, and the extreme pain I experienced right after eating (which kept me from eating more than about a cup of any given food at once) – became unbearable that a gastroenterologist looked at me and said, “I think I know what’s wrong with you.” Only people who have waited years for a diagnosis know what a blessing it is to finally hear those words.

I don’t know exactly how my mother felt all those years that she looked at me, knowing something was wrong, but not knowing what it could be. Of course, my mother turned out to be a celiac herself. I think there was always a kinship between my mom and me because we were both sick with something we couldn’t name and that, in fact, we weren’t always sure was real. I remember one time, in particular, telling her that I didn’t feel well. She asked me what I meant, and when I told her that I didn’t know, I just felt bad, she shook her head knowingly. It was as if we both understood that we didn’t have the language to talk about the ways we could feel our bodies failing us sometimes. She always believed that the sickness that she felt was the same sickness that I felt, and she was right about that.

She was wrong about what the sickness was, though. She’d been told all her adult life that all of her health problems stemmed from low iron levels. No doctor could tell her why she was anemic. Doctors have a word for when they’ve thrown up their hands and can’t figure something out, it’s idiopathic. I recoil from that word every time I hear it or see it written. If a body is malfunctioning, there is always a reason. That’s my opinion anyway. My mother’s anemia turned out to be only a symptom of her illness: celiac disease. The borderline anemia I had experienced from early childhood turned out to have the same cause.

I keep sharing my story because I believe it’s important for people to know what celiac disease can look and feel like. Raising awareness will get more sick people diagnosed. And that is why I found this story from the New York Times Parenting section so compelling. It is the story of actress Casey Wilson and her oldest son, whose depression, lethargy, broken leg, seizure, and apparent autism all turned out to be symptoms of the same underlying problem: celiac disease. The story is both terrifying and hopeful. Casey’s son, then under four years old, was too young to be able to tell his mother that anything was wrong with him, but Casey and her husband kept watching and finally found a doctor who was able to connect the dots and give them those incredible words: “we have a diagnosis.” And though her journey to her son’s diagnosis was something out of a parent’s nightmare, her son has experienced an amazing recovery just by following a gluten-free diet.

If you have a story of diagnosis, for any disease, (particularly one that’s tricky to pin down, like an autoimmune disease) I would encourage you to share it in whatever way you can. You never know who might be listening, watching or reading. Your story may give hope and much-needed information to someone out there who is still struggling with an inexplicable illness.

For those whose lives or loved ones may be affected by celiac disease, there are many outlets for you to find information and to share information, but I would recommend checking out the Celiac Foundation’s website at celiac.org. You can find out information about celiac disease and gluten-free living, sign up to participate in clinical trials (in certain areas of the country), join the iCeliac patient registry, take part in their student ambassador program and even share your story with Congress.

Breast Cancer Awareness Month

By Marianna Boyce

Breast Cancer Awareness is highlighted in October to bring attention to one of the most diagnosed cancers in women. One of every eight women is diagnosed in the United States alone. Chances are, it’s likely you know someone who has fought or is currently fighting this vicious disease. Men can also develop breast cancer, but their odds are much lower. If you or a loved one have been affected, I’m sure your awareness extends well beyond the devoted month of October every year.

The exact cause of breast cancer isn’t known, but one thing is clear: this global issue is non-discriminatory.

ribbon.jpgAccording to the National Breast Cancer Foundation, approximately 41,760 women, and 500 men will die each year in the United States alone; however, this same website reports that death rates have also steadily declined since 1990. Contributing factors to this trend are increased awareness, early detection, better screening, and improving treatment options.

We should be aware of risk factors, along with small steps we can take in order to fight against breast cancer. Some risk factors can be avoided, such as alcohol intake, but other factors like family history cannot be. A monthly self-exam is a step in the right direction to detect issues early.

According to the American Cancer Society, current guidelines for breast cancer screening is as follows:

  • Women ages 40-44 should have the choice to start annual breast cancer screening with mammograms (x-rays of the breast) if they wish to do so.
  • Women ages 45-54 should have a mammogram yearly.
  • Women 55 and older should have a mammogram every two years, or continue yearly screening if they wish.
  • Screening should continue as long as a woman is in good health and is expected to live ten years or longer.

Every woman is unique. You should know how your breasts normally look and feel. Remember that your monthly self-exam is the most powerful tool in early detection. If you feel a lump, or something that doesn’t feel normal, make an appointment with your doctor immediately.

Visit www.nationalbreastcancer.org/breast-self-exam to learn the proper way a self-exam should be performed.

Life is busy—I get it, but something as simple as a buddy system to help remind one another to self-examine each month could potentially save a friend, loved one, or even your own life. Set a recurring reminder on your phone for a time you can take a moment and devote it to your health.

When’s the last time you did your breast exam? Don’t wait ladies. Do it today.

A Sweet Boy Named Wyatt

By Tina Michelle Cameron

wyatt outdoor pictureThis will probably be the hardest blog I have written to date. It is part two of a blog from earlier this month which was about September being Childhood Cancer Awareness Month. You see, I want to tell you about a sweet boy named Wyatt. It is easy to talk about Wyatt; it brings a smile to my face and warms my heart to think about him, but with the smiles, also comes tears. Wyatt Edward Brown was born on October 28th, 2014 to the most amazing parents I have ever met – Ashley and Eric Brown. If you follow my blog or are friends with me on Facebook, then you know that I am a nurse at Lexington Medical Center on the oncology unit. This is where I met Wyatt’s mom, Ashley, as she is also an oncology nurse. Ashley and I became friends while working together which is how I got to know this beautiful little boy.

Sweet Wyatt, as I always affectionately called him, was kind, sweet, funny, smart, and so loveable and loved. He loved superheroes (the Hulk was his favorite), cheering on the Clemson Tigers, playing with his action figures, watching his favorite video, The Hulk vs. Batman, and spending time with his amazing family. He was smart having already learned to read and work an iPad like a grownup at age two.

wyatt and mimi adn gigiWyatt was the strongest and toughest little boy that I had the pleasure of getting to know and love. He would light up a room with his smile and gave the sweetest hugs and kisses. Some of my favorite memories of Wyatt were playing with his toys or just watching cartoons. Another favorite is when they would FaceTime me from Texas or call me during a football game to just say “Go Tigers!” (To mess with me because I am a diehard Crimson Tide fan).

Wyatt was diagnosed at three-months-old with Alveolar Rhabdomyosarcoma, a soft tissue cancer. He had surgery followed by 399 days of chemotherapy and radiation treatments. He went into remission, but then, unfortunately, relapsed – which led to more treatment, radiation, and an extensive surgery at M.D. Anderson in Houston, Texas. Eric and Ashley had to relocate there for three months for his surgery and treatment. This is where they met the incredible Melissa Bellinger who started the A Shelter for Cancer Families organization that provides housing and support to families affected by cancer in the Texas area.

bracelet team wyattAshley and Eric created a Facebook page (TeamWyatt) to keep family and friends updated on Wyatt’s condition. His page has 5,477 followers from all across the world. It is filled with messages of love, support, and prayers showing beautiful pictures of sweet Wyatt and his family. T-shirts, decals, and matching bracelets with the words “No One Fights Alone” were made to show support for Wyatt and his fight. Unfortunately, he passed away on April 28th, 2017.

Just a week after Wyatt passed, and despite their unimaginable loss, his parents held an event to honor Wyatt and raise money for A Shelter for Cancer Families. I was honored to volunteer with the organization and Wyatt’s family, and we raised $10,000 in one evening.

This amazing little boy endured surgeries, chemotherapy, and radiation treatments like a champ. He never complained. Wyatt will never be forgotten and will forever be loved by his beautiful family. Despite his life being so tragically cut short at two and a half years old, his parents and family gave him a lifetime of love and adventures in that short time. I know that he is watching over them and his new little sister Emma Ray Hope from Heaven and will forever be their guardian angel.

family picI will always love Ashley and Eric for allowing me to become an honorary member of their family and the time I spent with sweet Wyatt. Ashley, I love you like a sister, a close friend, and the daughter that I never had. Thank you both for sharing your most precious Wyatt with me and the world. To Wyatt, we will continue to fight for more funding and for a cure. You will always be my superhero.  I will always love you and hold you in my heart forever.

#teamwyattforever #noonefightsalone #superhero #hulk #sweetwyatt #ashelterforcancerfamilies

September is Childhood Cancer Awareness Month

by Tina Michelle Cameron

September is Childhood Cancer Awareness Month. Gold is the color representing childhood cancer. How I wish that neither of these would exist. Cancer shouldn’t exist—for anyone – adults or children. This statement is coming from a woman who worked for 25 years as an adult oncology nurse. I would love to have to find a different field of nursing to work in – this would mean, cancer doesn’t exist. But, unfortunately, this is not the case.

Image 2Many people think childhood cancer is rare. But, each day in the United States, 43 families will hear the words parents should never hear: “your child has cancer.” It is the number one disease killer of children in the U.S. and the second leading cause of death (after accidents) in children ages 5-14. This means that every two minutes a child is diagnosed with cancer. This is an average of 300,000 kids worldwide being diagnosed each year—does this sound rare to you? This is unacceptable. Something must change. We need to demand more for these precious, innocent children.

I have listed the seven most common types of pediatric cancers. Leukemia is the number one cancer in children followed by Rhabdomyosarcoma, Wilms’ Tumor, Neuroblastoma, Lymphoma, Retinoblastoma, and Brain/Spinal Cord Tumors.

According to the Coalition Against Childhood Cancer (CAC2)* in 2014, of the $4.9 billion budget of the National Cancer Institute (NCI), only four percent went to research for childhood cancers. So, exactly how much is 4%– 4% of a dozen donuts is half a donut; 4% of an 8-hour night of sleep is 19.2 minutes and 4% of a $50,000 salary is $2,000.

Image 3Are you shocked? Has your mouth fallen open yet after reading that? Mine too. Were you also aware that since 1980, there have only been 3 new drugs approved for pediatric cancer treatment? In addition, only 4 new drugs approved for both pediatric and adult cancer treatment. These children are receiving adult-strength dosages to treat their cancers. The NCI needs to put childhood cancers as a higher priority as well as pharmaceutical companies. Many adult cancers receive private funding, this is not the case for pediatric cancers.

Parents are terrified of losing their child to this horrible disease, but must also still deal with life—work, other children at home, financial worries, as well as watching their child be sick with nausea/vomiting, pain, diarrhea, mouth sores, hair loss and other side effects from their treatments. Children that survive cancer often face lifelong problems from their treatments. These problems can range from breathing problems and difficulty walking to sight, hearing and heart issues. Many of these children can become traumatized from everything they go through. So, even though the treatments are over, their journey is still not over. They will have the fear of it returning.

Image 1Parents should not worry about losing their job, their home, their car or getting behind on bills because of the financial burden that cancer treatments cost. Many parents must create a GoFundMe page, so they can stay with their child in the hospital or be with them for their lengthy treatments. This should not be. We as a nation need to stand up for these children and do better. We need to ensure more research funding goes to these children. They deserve more than 4%.

*Credit for cancer statistics given to Coalition Against Childhood Cancer and the National Cancer Institute.

Celiac Disease and Children: Some Things to Keep in Mind

By Rachel Sircy

pic 1I’ve been thinking lately about my daughter, who is four, and about whether or not she may also have celiac disease. I’m sure that those of you out there who are celiacs wonder about passing on your gluten intolerant genes to your children. So, for those out there wondering if you should get your children tested for celiac, here are some facts from the Celiac Foundation’s website about children and celiac disease:

* Children with a first degree relative who is a celiac have a 1 in 10 chance of developing celiac disease. So, it’s not a certainty that your child will develop celiac disease if you have it, but they have a higher chance than someone who doesn’t have a close relative (parent, sibling) with celiac.

* Some children start showing signs at different times than others. The jury is still out on why this happens, but some children will begin to show signs of celiac in late infancy or toddler-hood and some don’t develop symptoms until much later in childhood, even into the late teens or early adulthood. What this means is that even if your child is older and has been consuming gluten for most of his or her life, they can still develop celiac disease.

* Children of different ages are more likely to exhibit different symptoms, but there is some overlap in the signs children manifest when they have celiac. Keep an eye on your child if they have a lot of bloating, gas, constipation or foul-smelling diarrhea, chronic fatigue, irritability and especially if they are very young and are vomiting frequently and have poor growth or failure to thrive. Some rarer or more unusual symptoms which can appear in childhood are frequent mouth sores (I still get these!) and that itchy, blistery skin rash known as dermatitis herpeteformis.

pic 2So, apparently severe celiac disease is not common among children anymore, so the symptoms listed above may not be strong enough to be alarming. However, if you know that your child has a higher risk of celiac disease, just be on the look out for those symptoms listed above. And make sure you check out the Celiac Foundation’s website, they have a wealth of information for you to draw from. Remember, children heal from celiac disease much better than adults do. It’s better to get your child tested earlier rather than later because the sooner you can get them on a gluten free diet, the sooner they can heal.

Living with a Chronic Illness

By: Tina Cameron

Not many people know that my two sons and I have a chronic illness that has no cure. It all began when my oldest was 9 years old. He was injured in his karate class (kicked accidentally in the head) by another kid. He was close to having a detached retina, had a black eye, busted blood vessels and spent 8 weeks wearing an eye patch. What we didn’t realize for several weeks was that this kick to his head turned out to be a blessing in disguise. He started having a “clicking” sound when he would move his head up and down or left and right. He thought it was a party trick. Little did we know that it was actually very serious. From his pediatrician’s office we were sent straight to Palmetto Health Richland for STAT CT Scans of his neck and spine. I began getting nervous as they kept coming to get him for more scans. At last, I heard my name being called and looked up and it was the radiologist with my son and tons of CT films in hand. She said Dr. Fred Piehl (pediatric orthopedic surgeon) is waiting for you now. I said, “it is 4:50, they are closing”. She replied, he is keeping the office open for you, you need to go now. I called my mom and my ex-husband and they both met us there.

As we all set in his office, I feared the worst. Corey was in the hallway and he spoke to us first and informed us what his condition was and that it could be life-threatening, and that Corey needed to be aware of it. He was diagnosed with Atlanto-Axial Instability of his Cervical 1 and 2 spine. He could turn, cough, sneeze or get in his head and it cause him to break his neck and with that he could break it and be fine, break it and become a quadriplegic instantly, or break it and it kill him instantly. We went home in shock. Everything changed, from how his bed was positioned, to never being able to play contact sports, diving in my parent’s pool, and his karate career was over. He was also home-bound from school for 9 months. He was 9 hours short of getting his black belt. He what is edsalso taught two classes of karate a week. We were sent to a neurosurgeon and neurologist as well geneticist. After our first visit to the neurologist, he said I think you all have this rare connective tissue disorder called Ehlers-Danlos Syndrome, Type 3. He told me to look it up and then sent us immediately for lab work on another floor in his office building. Shortly after his labs were drawn and we were waiting to leave, Corey grabbed his head and said, “I don’t feel well”. He proceeded to fall out of the chair, had a Grand-Mal Seizure and quit breathing and his heart stopped. I am a nurse and at that moment, I freaked out and was only the mommy. Thank God there were two other nurses there for lab work that revived him. We were on campus of the Children’s Hospital, so we were admitted from the emergency room for the weekend. He was also having incontinence of urine and numbness/tingling in all his extremities. Seizures also go with the Ehlers-Danlos Syndrome (EDS).

Once we had the official diagnosis from the geneticist, I became obsessed with finding everything I could about it. My friends who are physicians had not seen cases in over 20 years. It can affect your heart and affects all your connective tissue in your body, it affects your skin. The type we have, type 3 is now called hEDS (hypermobile Ehlers-Danlos Syndrome). There are now 13 different type of EDS. It is a group of inherited connective tissue disorders caused by abnormalities in the structure, production and/or processing of collagen. So, we have faulty collagen. Collagen supplements do not work for us, because it is our DNA that is screwed up. Basically, the boys and I have easy bruising, easy bleeding, incisions after surgery do not stay closed and we are extremely hypermobile and have soft, stretchy skin. We are prone to multiple dislocations daily, pain all over, bruises that come from something as simple as rolling over in bed. EDSers also have multiple medicine and food allergies and Corey and I do. This condition is hereditary, so unfortunately if my children have kids, there is a 50/50 chance their kids will have it as well. The most serious type is vEDS (vascular EDS)-this is where most people do not live past 35 and they usually die unexpectedly from an aortic dissection. My older son has the most serious case of hEDS out of the three of us and I have it moderately and my youngest just has it mildly.

When Corey was growing up, he began having dislocations from changing his shirt or raising his hand in class, to hip dislocating from walking in the school halls. He went through extensive physical therapy for 3 months and to this day must work out daily. We ended up not having the rod placed in his spine and gradually the numbness and incontinence went away. His instability in his C1 C2 spine has closed some which is wonderful. He learned how to put his shoulder or hip back in place on his own to avoid trips to the ER.

My hip has dislocated once, my shoulder 3-4 times from rolling over in bed when sleeping. I am in constant pain all over almost daily. My knees are bad and slip out at times, so I have braces to wear as needed or when I run. Bruises on my body, stay about 8 weeks where on normal people, just a few days. I even get bruises from fire ant bites.

Both boys have had complete knee reconstructions, at age 16 and age 26. We know we will be facing knee and hip replacements as we age. This condition affects our eyes, our teeth, and pretty much our whole body. Most people with hEDS also have Fibromyalgia, chronic fatigue, migraines, and more.

Knowing that you have a chronic illness with no cure is a hard pill to swallow. However, I try not to let it run my life. I deal with the pain and take Advil with me everywhere. There are days, I hurt so much all over I cannot get off the couch. Many physicians have not ever heard of EDS and many do not believe the patient and think they are hypochondriacs. Family members also doubt us (not mine), but people that I have met in online support groups. We started calling ourselves Zebras because in Med School, thewhy the zebra students are taught to that when you hear hooves, think horses, not Zebras. In medicine, the term Zebra is given to a rare disease or condition. That is how we became known as medical Zebras. Because of the complex nature of our disorder, we are followed by primary care, rheumatologist, geneticist, cardiologist, physical therapist, gastroenterologist, urologists, neurologists and many more specialists as things arise. Some of the friends I have made in my support group are already on disability at 22 and 32 years of age, so I feel blessed that as of right now, my joints have tightened up, I can deal with the pain and that thank God, we do not have the vascular type. I thank God everyday that my boys otherwise are healthy and that Corey’s doing much better and is in great physical shape.

eds scoreSo, the next time you see a contortionist on America’s Got Talent, more than likely, they have Hypermobile Ehlers-Danlos Syndrome. And, if you see someone parked in a handicap space get out and they can walk (just slowly) or is young and, in a wheelchair, —do not judge. Not all disabilities are visible. Because of so many people in the medical field not knowing or even understanding EDS, awareness needs to be widespread globally. Fortunately, May is EDS Awareness month and with numerous online support groups on social media, we are getting the awareness out on what this disorder is. What we need most is for our physicians to believe our symptoms and not dismiss us, or think we are hypochondriacs. There are genetic markers for vEDS, so I am not sure why medical professionals are not believing genetic testing.

eds meme

Summer Fun

By Lisa Baker

Hope you are all having a great summer.  We have had quite a few activities already. At this point we have Dad on hospice care.  He continues to be aggressive at times, however, changing his medication has helped some. My last visit with him I stayed exactly 12 minutes.  He was busy trying to take the closet doors down in his room.  Of course, without any tools he wasn’t going to get that project done, but he had no time for me at all. I tried to get him to sit down and visit with me.  He sat for one minute and was back up working on the closet doors, so I left. He has lost weight and is now wearing pull ups most of the time.  Hospice helps out by providing the pull ups and his medications among other things.

pic 1_fallen limbDuring a bad storm a week or so ago, we lost electricity.  We live close to Dreher Island State Park. By that evening my husband decided we would go to a motel for the night. I’m not sure exactly when our electricity came back on, but when we got home Sunday morning it was on. It’s amazing we didn’t have a tremendous amount of limbs down in the yard.

That afternoon, I went out to take some pictures. Our yard has several areas that are rocky and uneven.  I somehow managed to fall right on the rocks. Yes, I had shorts on, so I really hurt my knees, especially the left one.  They are all scraped and scabbed over. I also sprained my right wrist and managed to hit the side of my head, breaking my glasses.pic 2_sprained wrist

I hurt so bad that I told my husband to take me to urgent care. Thank God nothing was broken. I have never hurt so bad in my life. The doctor gave me a work excuse for the whole week and I hurt enough that I followed doctor’s orders. I’m still sore even this week, but not as bad as last week. I’m slowly healing.

pic 3_Lisa and husbandOur summer has been not so much fun but full of adventure for sure. Through it all, my amazing husband continues to be my rock.  He always supports me in everything I do. 

Make memories and have a safe summer!

Lisa