A Different Normal

By Krista Kellogg

One of the most difficult things about living with a chronic disease like psoriasis or psoriatic arthritis is learning how to integrate it into your life.  It doesn’t go on vacation when you want to go to the pool with your kids or on a job interview or a date.  It’s always there, waiting to sabotage the best plans.

When you’re living with a chronic disease, life requires extra effort and accommodation on all fronts, from getting a haircut to the logistics of your sex life.  It’s a 24-7 consideration, and unless you embrace it as part of your journey and help those around you understand what it’s all about, it’s easy to miss out on your own life.  Not until you can advocate for yourself and educate your manicurist, your co-workers, your partner and your elected officials about the impact of your chronic disease, can you truly feel like you are living like a first- class citizen.

Being an advocate doesn’t mean you have to pitch a tent in the park or join a drum circle (not that there’s anything wrong with that).  It’s about telling your story in an impactful and meaningful way, making it part of your vernacular instead of suffering in silence.  When I first began talking about the impact of psoriasis on my life, I cried all the time.  I had pushed the pain down so deep that when I allowed myself to open the flood gates, years of shame and embarrassment flowed out.

Accounts of my most private mortifications in dealing with psoriasis became a new language that I could use to advocate for myself and others.  Sometimes they were logistical, like the time I threw away my satin bridesmaid sandals in the dumpster behind Aldie Mansion before the reception at my step-brother’s wedding because they were so caked with blood from my cracked feet.  Sometimes they were discriminatory, like the third and final time my manicure appointment was “canceled” because they didn’t want to service anyone that was “contagious.”  And sometimes, they were personal, like all the times I wondered if my husband saw me as the monster I thought I was… a cracked, swollen, oozing monster with a limp and a sandpaper touch.  They were always compelling, though.  Years later, they still are.

Our stories validate our requests for better and safer treatments, more research, and a cure.  They help our representatives in Congress justify requests for increased funding and access to fair and affordable insurance coverage.  If we don’t tell our stories, who will?

Anyone can be an advocate.  It’s simple.  You can write a blog, send a letter to the editor or use social media to advocate for your disease.  You can email or tweet your member of Congress about a bill or an issue and become a “fan” of his or her Facebook page.  Just start by telling your story.  Join me in advocating for psoriasis and psoriatic arthritis.

Krista Kellogg was elected to the National Psoriasis Foundation Board of Trustees in 2006 and currently holds the position of chair-elect. She is chair of the Board Governance Committee and a member of the Development, Finance and Outreach Committees. She also served as chair of the 2011 National Volunteer Leadership Conference. Krista has palmar-plantar psoriasis.  She lives in Miami, Florida, where she is the marketing director at the law firm of Stearns Weaver Miller.

By Maya Brown-Zimmerman

Having a chronic illness doesn’t allow you the luxury of taking a lot for granted. Growing up, I had to give serious and early consideration to issues most of my peers never had to think about.

There was never a question in my mind whether or not I’d be a mother. Raising children was something I dearly wanted to do. The only question for me was how my future husband and I would go about establishing our family. Having Marfan syndrome meant two things for me: 1) any pregnancy would be high risk and 2) any children naturally conceived would have a 50% chance of also having Marfan.

When my husband, Mark, and I got engaged, we decided to examine all the options available for eventually growing our family.

First, I underwent genetic testing to determine my specific Marfan-causing mutation. It’s estimated that 90-95% of people with Marfan syndrome are able to find their mutation and, in most cases, the mutation is unique to their family. Luckily, my mutation was identified, which increased our options.

1)  We could have a baby the old-fashioned way and take our 50/50 chance of having an affected child. I’m more mildly affected, but even though the baby would share my mutation, mutations are rarely predictive of severity and so s/he could be more severely affected than me. Because I knew my mutation, we could do prenatal testing to determine the baby’s diagnosis or test any time post-delivery.

2)  Pre-implantation genetic diagnosis (PGD) is an option. This would entail using IVF and testing the embryos for my mutation prior to implanting one. PGD would almost completely reduce the chance of having a baby with Marfan syndrome, assuming that any of the embryos tested negative. It can be an expensive procedure, however, and is often not covered by insurance.

3)  Surrogacy is another route, particularly for those women for whom pregnancy would be very unsafe. PGD can be done as well, or donor egg/sperm can be used, in order to reduce the risk of passing on Marfan syndrome.

4)  Finally, there is adoption. Domestic or international, adoption both eliminates the health risks to a woman with Marfan and the risk of passing on Marfan syndrome to your child.

Mark and I deliberated at length the best course of action for us. There was one thing I felt sure of: I wanted to experience pregnancy if it was relatively safe for me to do so. Of course there are ethical implications, and we spent a long time discussing them. Would it be selfish to bring a child into the world who had a “less-than-perfect” parent? Would it be selfish to have a child who might inherit a potentially life-threatening genetic disorder?

On one hand, we worried about having a child with Marfan. Would he hate me for that? Would he be more affected than me? On the other hand, I know a great deal about Marfan syndrome and we could provide our child with access to knowledgeable doctors, the latest research, and a large community of people who have the syndrome too. All of those are things I didn’t have growing up. Also, I’m happy with the life I have. Although having Marfan has prevented me from doing some things, I’ve achieved quite a bit in spite of it, and actually, because of it. My life has been enriched by the people I’ve come to know as a result of being in the “Marfamily,” and even by the negative experiences I’ve had, like surgeries.

In the end, after consulting with my team of doctors, we decided that what was right for us was to conceive naturally and accept the risk of passing on the syndrome. Although having Marfan syndrome complicates my life and some days I wish I’d never heard of it, it has shaped who I am today. I feel like I have a great life and I hope to impart that attitude to my children.

We now have two beautiful sons, and hope to someday adopt a 3rd child. Our second son, Baby J, does have Marfan syndrome. And while his life has some unique challenges to it, he also has the benefit of being raised among a community of other people with Marfan who can show him just how sweet life can be. I’ve volunteered with the National Marfan Foundation in various capacities since I was a teenager, and the members of the Foundation have become a second family to me. Some of the teens I work with have already offered to serve as Marfan mentors for J as he gets older, and I know he will be in good hands.

I believe there’s no wrong way to create a family, and I’m grateful we live in a time where there are so many options.

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and the Sensory Processing Disorders Blogger Network.

Jack Kriz serves as a Family Liaison and Member of the Board of Directors for the National Foundation for Ectodermal Dysplasias. He has firsthand experience with the rare condition as he is affected by the type of ectodermal dysplasia known as ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. Jack has been active with the NFED for 10 years raising awareness and funds, participating in Grand Rounds, presenting at their National Family Conferences, and providing outreach to families.  He lives in Oregon with his wife and daughter and is an architect with Mildred Design Group.

It’s a simple thing to do. Kids do it all the time. By age four, five, or six, they jump into their shoes, tie ‘em up, and race out the door to play. I can remember clearly, sitting on the hearth of rugged red lava rock in our 20′ x 20′ farm house, a high top leather boot on each foot, leather laces through six or seven sets of eyelets, four pair of hooks, and there hung the lace ends, waiting impatiently to be tied…. I so much wanted to be like my two older brothers and tying these boots was another way to be like them. Dad had said I had to learn to tie my shoes before I went to kindergarten. My siblings had learned it before going to school, so I would too. My two brothers and my sister showed me how they tied their shoes, but I had to figure out a different way.

I was born with Ectrodactyly–ectodermal dysplasia–cleft syndrome (EEC), a condition that in my case resulted in not having two fingers on each hand and two toes on each foot (Ectrodactyly). This is not a life-threatening condition by any means, but it requires adjustments as one deals with life’s activities. The fingers I do have have joints that are fused such that no one finger can be made straight. Learning to tie shoes becomes problematic when those showing you how have all those ‘extra’ fingers in the mix. I mastered this now insignificant feat  in my own way, but not without the significant influence of my family. Some wonder how one deals with a condition like EEC? How did I manage to go through school? How did I figure out how to hold a pencil that works for me and therein learn to write? Trial and error, that’s how – like most kids, just in a different way. Years later at the University of Oregon, I was using that same grip on an Exacto knife, cutting balsa wood for scale building models.

When asked where my success comes from, I point to my Mom and Dad and my siblings: they all contributed in fostering an atmosphere of positive attitudes with a can-do spirit, mixed in with the typical sibling rivalries and a few “he hit me first!”. My parents got no instruction manual for my condition when I was born. In fact, in the mid-1950′s there was barely even a name for it. With instinct and love, and just going about life with what you have, my family helped me become a confident adult. And now, as a fellow 59 years old, there are new challenges. Holding a cell phone in one hand while dialing a number and right clicking the mouse while still grasping its body (as an architect, the mouse is the main tool I use in this age of computer aided design) are two of the new skills to master in my adult life. But these new challenges have been met with the skills refined from my youth, now with a wonderful wife and daughter of my own added to the family ‘support’ group.

As I grew up, I came to understand how important a supporting family and friends are to a person’s success, that teachers and other adults are key ingredients for achievement. How one approaches a task or activity, and the sincerity of your support group, very much determines the likelihood of success. Do others cheer you on or, are they minimizing your efforts, as if you are trying to achieve the impossible? If my family had just assumed I could not learn to tie my shoes, and not pushed me in my efforts to do so, then I would have been wearing Velcro shoes the rest of my life! I owe so much of my life to them and am so thankful for all that they’ve done for me – especially for their understanding that, whether our lives are “normal” or whether we’re living with a condition that creates a “different normal”, each of us must take the life we are born with and make it full.

Shelly Kozicki lost her husband, Craig, to mesothelioma in April, 2009.  Since her husband’s diagnosis, Shelly had been on a mission to raise awareness and funding for mesothelioma research. Through her work she has met many other families affected by mesothelioma who keep her motivated and focused in her mission. Aside from her events, you can also be sure to find Shelly attending the annual International Symposium on Malignant Mesothelioma.

For 11 years, I was the caretaker for my husband, Craig, as he battled mesothelioma – a rare cancer caused by asbestos exposure. His diagnosis was grim, and we faced the unique challenges of fighting a disease with little research, funding and treatment options. Like others facing difficult diagnoses, the prognosis left me and my family feeling hopeless and searching for a cure. But through all the chemotherapy and radiation treatments, I learned that helping others was often the best medicine.

We traveled to New York from St. Louis for a clinical trial and were surrounded by talented doctors and an outpouring of support back home from our family and friends.  But as time passed, I became painfully aware that despite the efforts of our amazing medical team, there were just simply not enough research dollars going toward finding a cure. So, nine years into Craig’s fight, I decided to take action.

With the goal of raising $100,000, I started working towards funding the first Craig Kozicki Research Grant in 2007 through the Mesothelioma Applied Research Foundation.  My efforts,  in honor of my husband, went toward finding a cure and raising awareness for this orphan disease. My ambitions started small with a simple letter writing campaign, and slowly grew into larger events like Quartermania. With the support of family and friends, we reached our $100,000 goal in only one year. Although my husband lost his battle with cancer in 2009, my fight continues as I am on my third research grant and will not stop my efforts until this disease is eradicated.

I have learned that fund-raising is more than just supporting a cause; it is also, in itself, a form of therapy. When I dealt with Craig’s illness day in and day out, I was constantly surrounded by the negative consequences and tribulations faced when watching someone you love battle a disease. But, when I started fund-raising, it allowed me to incorporate the disease into my life in a positive way, bringing me hope, support and a sense of empowerment. For the first time since his diagnosis, I felt some control and that my actions and efforts could make a difference for my husband and others.

Although I have given a lot with my fund-raising efforts over the years, I have received so much in return. This cause has grown exponentially, and the support from organizations like the Meso Foundation and other families dealing with this illness has turned a solitary fight into a devoted community. During the pain of dealing with my husband’s passing, this community gave me support and the opportunity to redirect my grief into positive action. Now, I fight in Craig’s memory and am optimistic that, one day, our work will no longer be needed and a cure will be found.

I hope my story inspires others to fund-raise and realize the breadth of its impact — not only in its benefits to raise awareness and funds for a cause, but also in its ability to give you a voice when you feel mute, to give you hope when you feel hopeless and to give you power, at a time when you feel powerless. I wish I had known earlier in my husband’s illness the comfort and satisfaction standing up to this disease would bring me. I didn’t expect that my campaign to help others would, in the end, help me.

The Mesothelioma Applied Research Foundation is the leading organization dedicated to eradicating mesothelioma as a life-ending cancer by funding peer-reviewed mesothelioma research, providing patient support services and education, and advocating Congress for increased federal funding for research. The Meso Foundation was founded in 2000 and since then has independently funded over $7.1 million in peer-reviewed mesothelioma research. More information is available at www.curemeso.org.

Krista Kellogg was elected to the National Psoriasis Foundation Board of Trustees in 2006 and currently holds the position of chair-elect. She is chair of the Board Governance Committee and a member of the Development, Finance and Outreach Committees. She also served as chair of the 2011 National Volunteer Leadership Conference. Krista has palmar-plantar psoriasis.  She lives in Miami, Florida, where she is the marketing director at the law firm of Stearns Weaver Miller.

Living with a chronic disease like psoriasis can be isolating and lonely, but it doesn’t have to be.  I have been living with psoriasis on my hands and feet and the chronic pain that comes with the territory for a decade.  When I was first diagnosed in my 20s, I knew all about the effects of psoriasis from watching my mother struggle with the disease.  I watched her wilt beneath the debilitating cracks, swelling and fatigue of chronic pain.  Through the years, I have come to know her struggle in the most intimate way one can, by sharing the disease with her.  I was devastated when the rough patches and cracks began to appear on my own hands and feet, but I really didn’t know what I was in for… the long haul, a lifetime, forever.  At 27, I had barely committed to a career path or a boyfriend, and suddenly I was in a non-consenting relationship with a lifelong condition for which there is no cure.  I wasn’t just devastated, I was mad.

It feels great to get anger off your chest.  As in, “What?! My feet and hands are going to crack open and bleed for the rest of my life and there’s nothing I can do about it?! [insert expletive here]!” There is release in expression and a healing that comes from being heard.  With psoriasis, there is a widespread misconception by the general public that this chronic disease is merely a “skin thing” or “a rash” or “my cousin had that and it went away when she moved to Florida.”  It can be maddening and worst of all, silencing, especially because it can be difficult to articulate the physical and emotional burdens of psoriasis to others.  It is lonely, painful and tiring.  It is your inner negative self-image flipped inside out and on display for the entire world to see… and recoil from.  Treatments, though improving all the time, are not a cure-all. It is easy to lose hope in the face of failed treatments and literally feeling trapped in your own skin.

For me, the only way to break free – and break the silence – was to get educated.  I needed to know all there was about psoriasis and psoriatic arthritis.  I needed to know who else out there was struggling, fighting and overcoming. I combed the National Psoriasis Foundation website and lurked on the message boards for months before I reached out, eager for shared experience.  Once I sent my first post out, there was no going back.  The more I talked about my disease, the more I saw my experience in others.  It felt wonderful to go from “sufferer” to “supporter”.

Ten years later, I still struggle with my disease, but I am proud of the fight.  I have taken charge of my health and what it means to live with a chronic disease.  I speak about my psoriasis and relish every opportunity to educate co-workers, friends and family about the newest treatments and breakthroughs in research.  I am a proud member of the Psoriasis Foundation Board of Trustees and serve in several different capacities through my board work.  Getting involved and serving on behalf of other people like my mom and me has made all the difference.

I urge anyone living with chronic disease to reach out and find a network of people to connect with.  It is easier than ever to step into a conversation and share your thoughts. All it takes is a few keyboard strokes, a post, a text or a tweet. How are you coping and communicating about your chronic disease?

George Segall, MD, serves as chief of the Nuclear Medicine Service at the Department of Veterans’ Affairs Palo Alto Health Care System, Palo Alto, Calif., and professor of radiology at Stanford University, Stanford, Calif. He is currently president of the Society of Nuclear Medicine and has published more than 60 peer-reviewed journal articles and authored six book chapters on nuclear and molecular imaging.

A cancer diagnosis is always a scary thing. And even after successful treatment, there’s still fear – fear that cancer will recur. Routine surveillance and checkups can help ensure you are still healthy, and after each clean checkup you can breathe a new sigh of relief. Unfortunately, for some cancer patients, the doctor may suspect a recurrence, and then worrying begins again in earnest. Waiting for answers can make minutes seem like hours and days like weeks.

Physicians are now able to shorten this wait time by utilizing positron emission tomography (PET) scans to image a cancer site based on suspicious symptoms, an abnormal physical exam or other diagnostic tests. The PET scan can provide your physician with a way to see not only the structure of organs and tissue, but also how the cells are actually working. Since PET scans are non-invasive, this critical information can be gathered without having to schedule investigational surgery.

For some, this means that what appeared to be a tumor is shown by the PET scan to be just a benign mass, putting a quick end to the stress and anxiety of a recurrence. For others who may in fact be experiencing a recurrence, a PET scan allows the opportunity to start new treatment earlier for a successful intervention.

For many of the patients I speak with, just knowing is a weight off of their shoulders. They can get back to their everyday lives … or they take a deep breath and prepare to conquer their next battle with cancer. The term “knowledge is power” can apply to many situations, but for cancer patients, knowledge can help them pick up and continue on—whatever the path may be.