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Announcing a New Online Group for the CF Community & A Look Back at the 2016 CF Education Day

Announcing a New Online Group for the CF Community &                        A Look Back at the 2016 CF Education Day

Posted by: Summer Katz, M.A., LMHC, Patient Advocate

I receABA_5993ntly had the opportunity to speak a bit about my life, as well as share encouragement related to coping with the emotional impact of CF at the 2016 Erin Phillips Cystic Fibrosis Education Day in Orlando, FL. It was truly an honor to highlight the benefits of some of my own creative outlets in coping; offering examples of music and positive catharsis as I shared a video collage of a number of people with CF that I’ve had the pleasure of meeting and getting to know over the years. Seeing those smiling faces was yet another humble reminder of how we can all strive to overcome the obstacles handed to us every day.

From my professional mental health counselor lens, I spoke about and acknowledged the fact that we certainly all cope differently. I mentioned the importance of pursuing healthy coping options as opposed to defaulting back into passive or dysfunctional coping. I also tried to normalize reactive versions of coping, stating that I can easily recall applying many of these avoidance methods in my own earlier years of defining my experience as unfair and getting stuck in that why me place.

The physician speakers, Dr. Mark Weatherly, Dr. Daniel Layish and Dr. Steven Boas, presented a number of topics related to the latest medical research and treatment interventions coming available to CF patients. Their presentations seemed very promising toward the CF community for pursuing improved longevity and quality of life. It was very encouraging to hear about the efforts and medication options stressing proactive interventions as opposed to merely reviewing infection care.

Also, hearing that the path of CF treatment may lead to increased genetic intervention was actually quite intriguing and very enlightening for young CF patients and families. These CF Education Days always have such great information about the medical component of cystic fibrosis intervention.

One topic that was explored throughout the event was that we are all seeing an increase in the emphasis on emotional acknowledgment for the mental health impact of the disease. As I shared a bit of my knowledge, I concluded that there are honestly so many facets of coping with the many stressors of life (certainly for those with the added component of cystic fibrosis) that it was impossible to fully explore all them during my brief presentation.

However, there is a way to further the exploration. During the event, I announced the creation of a NEW ONLINE CYSTIC FIBROSIS COMMUNITY for virtual connection to enhance the support that so many of us ultimately desire. This new Facebook group is called Cystic Fibrosis Connections.

My passion to lead this new group comes from being involved in the cystic fibrosis community for over 25 years, both through in-person interactions (CF camps and get-togethers) as well as participating in the original AOL and MSN chat rooms for CFers. It has been through those connections I’ve received a greater understanding of myself; found a sense of relatedness and belongingness; and certainly gained improved motivation and inspiration to live my best life. It is our hope that this new online group may provide such opportunities.

Living life with cystic fibrosis can be trying, stressful and overwhelming, certainly with the many complications that may arise. Those of us with a chronic medical condition actually experience depression and anxiety at three to four times the rate of the healthy population. Ironically, in many cases, because we perceive that there is much about our lives which we cannot control, we ultimately wish to be more in control or at least have a perception of increased control of our lives.

We determine that we need to know (the complications, the side effects, the outcomes) in order to plan. But then it becomes a question of if we actually know – are we at peace knowing? It is really up to each of us to recognize when we need additional resources, guidance and support to keep moving forward.

Unfortunately, it is quite easy to get stuck and become stagnant in procrastination, certainly in response to scary statistics or averages. This is where we all have an opportunity to lean on each other for support, to lift each other up and offer hope, because we get to create the beauty in life. We cannot just wait for it to happen, we make it happen!

• If you, a family member or loved one has cystic fibrosis and are looking for a safe place to connect with others where you can receive support and encouragement through your journey we welcome you to join our closed Facebook group called Cystic Fibrosis Connections to semi-privately* share and receive support in living life with CF. *Privacy will follow the rules of the closed status of the group.

• I would also like to invite you to then consider participating in our monthly CF virtual group: The CF Connections Virtual Support Group hosted by Cystic Fibrosis Pharmacy – Orlando. Here we can engage in supportive interaction, facilitated by me, the first Thursday of every month from noon until 1:00 p.m.

The Erin Phillips Cystic Fibrosis Education Day is a free event hosted annually in Orlando for CF families, caregivers and providers (following the North American Cystic Fibrosis Conference). If you would like information about future events or would like to talk with me about the new Facebook group or the monthly virtual CF support group, I welcome you to contact me at katzs@hhcs.com.

I would like to wish you a very happy, healthy new year! I look forward to meeting with you online.

Summer Katz, M.A., LMHC
Licensed Mental Health Counselor
Cystic Fibrosis Pharmacy Patient Advocate

Disclaimer: This blog is provided for informational purposes only (including brief topic exploration or reflection) and should not be used as a substitute for professional mental health or medical treatment.

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