Meet our Fall Walk Honorees: Deora Matvey – A Beautiful Outlook on Childhood Arthritis and Mona Britz – Arthritis Patient, Mother, and Everyday Inspiration… – Ashley Boynes, Community Development Director, WPA Chapter

We have two very special honorees for our 2009 Fall Arthritis and Wellness Walk at Idlewild Park. This walk and wellness event to be held on October 3rd honors not only honorary chairman Arnold Palmer and honorary public leader Senator Kim Ward, but also two very special everyday heroes — Deora Matvey and Mona Britz. Please, read on to learn about their personal stories. Their journeys are complete with triumphs and tribulations, but these arthritis survivors — one of which is only two years old — are positive examples of living with this condition while not letting it define you.

Learn more about their battles with arthritis, their ups and downs, and how they maintain a positive outlook through it all…..

CHILD HONOREE – DEORA MATVEY:

As the parent of a little girl who is not yet 2 years old, you would never expect to hear the words, “your daughter has arthritis.” Far too many people associate arthritis with the elderly, or, at the very least, the middle-aged. However, for children like Deora Matvey and many others, arthritis is a harsh reality of everyday life.

Sadly, some cases of juvenile arthritis are cruel and crippling, forcing children to spend days on end in severe pain and with disabling stiffness and immobility.

Deora was diagnosed at a mere 22 months old. She has been a survivor and an inspiration to her family and loved ones. She maintains a positive attitude in light of her condition, and her sunny disposition is admirable to all.  This is why we’ve chosen her as a very special honoree at our inaugural Fall Arthritis and Wellness Walk. On October 3^rd, 2009, we will celebrate Deora – honoring her and raising awareness for this chronic and potentially disabling illness that, sadly, affects 11,500 Pennsylvania children and over 300,000 kids nationally.

Deora was just diagnosed in March, 2009. Sick of seeing her in pain, her parents took her to the doctor in February when they noticed the toddler limping as she walked in the morning. Her health deteriorated, and she especially had a rough time upon waking. The Matveys could not figure out what, exactly, was wrong with their poor child. Not knowing the full extent of her condition, and unable to foresee all of what was going on, the doctors initially diagnosed it as, “growing pains.” Deora’s family accepted this diagnosis, at first, but yet they continued to watch her struggle on a day-to-day basis. When Deora’s grandmother took the little girl to buy new shoes, even the shoe salesperson acknowledged that Deora was favoring her right leg, and, unbeknownst to Deora herself, something was wrong with the way that she walked.

Deora’s pediatrician eventually referred the Matveys to an orthopedic doctor for testing, and when nothing unusual turned up in the x-rays of her knees, leg, and ankle, he referred them to the esteemed pediatric rheumatologist, Dr. Rosen at UPMC. Dr. Rosen has luckily been a joy for Deora and her family to work with. It was eventually determined that this sweet child was suffering from a case of polyarticular juvenile rheumatoid arthritis. This is a form of the autoimmune disease, JRA, that affects multiple joints. In addition to the other harsh symptoms that autoimmune diseases can cause, she’s had the joint pain spread from her legs and feet to her wrist, as well, and experiences stiffness all over – causing her to sometimes walk not only with a limp, but also hunched over. Despite it being one of the most common childhood diseases, many people still do not understand juvenile arthritis. Unfortunately, these children become dependent on a multitude of drugs and injections, and often feel like they are alone in their diagnosis. However, Deora is blissfully unaware that she is different from any other child, and continues to lead a full, happy, life as she enjoys a completely normal childhood.

Luckily, she is a strong little girl who, as she grows up, will not let her illness define her. Despite still living with a lot of pain, Deora has been responding fairly well to her medications and is surrounded by a family that loves her dearly. Not all children are so lucky with their treatment and/or support systems. Many end up in wheelchairs before the age of 10 or wind up using other assistive devices. Some days, they may be unable to go out and play with the other kids; many may have to give up activities that they once loved. Arthritis is the leading cause for disability for Americans over the age of 15, and unfortunately some kids, such as our beautiful honoree Deora, have to begin their suffering in the very early stages of life.

While it has been a trying experience for the Matveys and many other families and children who experience Juvenile Arthritis, Deora’s family sees her as a positive, happy little girl, living a normal life. While there has been some sadness in her journey, her strength in overcoming this condition at such an early age is an inspiration to all. These trials have proven Deora to be a strong and optimistic little girl who, in the light of this invisible illness, has been living life to the fullest and dealing with the cards she’s been dealt. Her grandmother claims that the family is very proud of Deora, and her mother says she is happy that they can maintain Deora’s positive disposition. They hope to maintain this sunny and innocent outlook for many years to come; for illness – chronic or not – should never overtake one’s life.

There is hope. If you wish to donate to our Fall Walk in Deora’s honor, please click here or click the “Donate Now” button below. Funds raised go towards creating awareness and contributing to research in the hopes that we can eventually help find a cure for arthritis, helping children and adults live a more healthful, better quality life while living with chronic pain and illness.

ADULT HONOREE – MONA BRITZ:

Our adult honoree, Mona Britz, is a shining example of how to “keep on keeping on” while living with chronic illness, as challenging as it may be.

Mona lives in Greensburg, PA, and is married with 3 children. While being a wife and mother can be a full-time job on its own, she also struggles with Rheumatoid Arthritis. However, she takes each day as it comes, and through all of her trials and tribulations, is able to remain strong, positive, and survive with Rheumatoid Arthritis, which can be an absolutely debilitating – and sometimes, stressful — condition.

Rheumatoid Arthritis is a chronic autoimmune disease that is the leading cause for disability in the United States and affects a remarkable 1-in-3 Pennsylvania residents. Mona is one of them. She was diagnosed in November of 2006 and has been struggling with the physical and emotional aspects of her condition ever since. Mona says that she’s had signs of RA in the past – even as young as 8 years old when a Baker’s Cyst was found on the back of her knee. However, it took extreme symptoms for her to get a confirmed diagnosis in her mid-30’s. Luckily, Mona has access to Dr. Larry Moreland, one of the most prestigious rheumatologists at the University of Pittsburgh Medical Center. Under his care, Mona has been doing as well as can be expected.

As with any condition, it has been a matter of finding the delicate balance of medications for the patient. However, Mona, like so many of us, has also had difficulty in balancing home and family life with having to travel to the doctors so frequently for treatment, as many RA patients do. For awhile, the difficulty in coordinating her everyday life with scheduling doctors appointments basically stopped Mona from partaking in proper treatment methods. She relapsed and, due to how badly she was struggling, has recently started treatments again. The stress was almost overwhelming. Mona says that she was always prone to anxiety, but that her anxious tendencies and panic attacks worsened with the diagnosis, and seem to really boil over during a flare-up. “I wake up in pain, and when I’m having a flare-up, I panic over how to take care of my kids,” she says. Many people stress over how to cope with an illness like this while also having to care for children, take care of a home, and get through their job and other everyday tasks.

Mona, like many of us who struggled with rheumatoid arthritis and similar conditions, had a hard time coping with her diagnosis, at first. While many RA sufferers can deal with the physical pain, the emotional toll it takes is sometimes just as devastating. Thoughts of inadequacy run through your mind when you cannot complete simple daily tasks due to unrelenting pain or debilitating weakness and fatigue. The exhaustion makes you irritable, and you may lash out at your loved ones. In caring for a family or household, it may become overwhelming to care for others when you have to constantly care for yourself. Living with a chronic condition can be difficult, and it is important to stay strong. Mona had difficulty in dealing with her diagnosis initially, but, despite admittedly still struggling, she has really come around.

She has been on a vast array of medications. Through her plethora of treatments, she’s found some solace in Simponi, a monthly injectable biologic drug and was recently put on sulfasalazine. She has seen some impact with the Simponi but hopes for further improvement as her treatment continues on. While she still definitely suffers pain and other symptoms associated with RA (such as fatigue and gastrointestinal problems), Mona stays focused on healing, and finds strength from her family.

Please click here or click the “Donate Now” button below to make a walk donation in honor of Mona.

With the support of the community, we can help strong women, men, and children like Mona and countless others, cope with this disabling illness. The public should know that many RA patients and others with similar conditions suffer silently – wanting to uphold the appearance of being a pillar of strength, all the while crumbling inside. Chronic conditions such as RA and other physical disabilities or autoimmune conditions are actually closely linked with depression. In fact, joint pain and other symptoms tend to overlap. It is important that we be educated not only on the physical ailments associated with arthritis and related conditions, but also on the toll that it takes mentally and emotionally on the patient.

So many of us live day to day with a smile on our faces, staying strong for ourselves and the ones that we love. However, like Mona, many of us have a hard time — for living with chronic disease is never easy. However, you can help.

By joining our walk or donating to the cause, you can further raise awareness and contribute to arthritis research.

In addition to Deora, our child honoree, as well as our honorary chair, golf legend Arnold Palmer, and highly regarded public leader, Senator Kim Ward, we are proud to have Mona Britz – an everyday hero --  as one of our esteemed honorees at the inaugural Arthritis & Wellness Fall Walk at Idlewild Park. Why don’t you start or join a team, or donate in her honor? For more information, please visit, http://fallwalk.kintera.org

I hope that you’ve enjoyed reading about these two lovely ladies. Deora’s happy-go-lucky attitude and Mona’s strength are wonderful examples of overcoming in the face of adversity.

As always, thank you for reading — and comments are welcome!

Be well,

~Ashley Boynes

Community Development Director

WPA Chapter

Advertisement

Explore posts in the same categories: Arthritis Advocacy, Arthritis Awareness, Arthritis Foundation Events, Arthritis Foundation Programs, Arthritis Foundation Updates, Arthritis Stories, JRA, Juvenile Arthritis, Uncategorized

Tags: arthritis, Arthritis & Wellness Walk, Arthritis Foundation, Ashley Boynes, chronic illness, Deora Matvey, Fall Walk, Idlewild Park, JA, Juvenile Arthritis, laurel highlands, Mona Britz, pennsylvania, Pittsburgh, rheumatoid arthritis, wellness, Western PA

You can comment below, or link to this permanent URL from your own site.