Tag Archives: community

Working for the IPPF has been something I have been interested in doing for about five years, since my pemphigus vulgaris finally got under control. I knew from my first contact with the Foundation that this is an amazing group of people. I am proud of the way our community pulls together and rallies for each other; it’s amazing how we sincerely care about one another.

Just as life is a journey, so is living with chronic illnesses like pemphigus or pemphigoid. In the last newsletter, I emphasized transitions along my personal journey. Chronic illness is an adventure no one signs up for, but once the diseases are triggered, life is never again exactly the same.

For those newly diagnosed, or their family, friends or caregivers, it can all seem unreal at first. There is a vague beginning to the new normal, as it takes time to get educated and to process the diagnosis and information. Even after there is an acceptance of the situation, it is overwhelming.

Everyday life becomes uncharted territory. One thing is for sure: now challenges seem to pop up a lot more. How the challenges are met will make the difference between function and dysfunction.

The pemphigus and pemphigoid (P/P) community is not a static one. Everyone goes through different stages in different ways, but with more similarities than differences. This is why the community continues to grow. People who have had very similar situations – and have made it through to the other side – are there to help you. Eventually, once your own life and illness have stabilized, you will have the opportunity to be there for others.

Some people will get more ill than others, and some people will respond more quickly to treatment. For everyone this is an adjustment — and again the degree of difficulty differs between people. Having an IPPF community, with a discussion group, a social media presence, award-winning newsletter and website, peer health coaches and volunteers (and more!), has helped many people along this journey in so many positive ways. Maybe YOU have been helped by one or more of our resources?

The IPPF works hard to ensure that no one has to go through this alone; this is not just helpful, but a bond, and one that strengthens everyone involved. It is a lifelong bond – one that keeps gaining strength. No one has to navigate this road alone any more.

This is the time of the year to give; but in our community, there is a need 365 days a year – not just one “giving” season. If you are not currently participating in some way – ANY way – there are many who would love to see you get involved.

ou do not have to dive into the deep end.

Start small, get your feet wet and move forward at a pace that is comfortable for you. Ask for help, guidance and advice along the way.

Consider sharing part of your journey with others in the P/P community. Maybe you…

  • know of an informative article we can use in the Quarterly?
  • would like to contribute a personal story that inspires others?
  • are available for an interview for an article?
  • can reach out to a newly diagnosed patient to lend an ear and encouragement?
  • have advice for the newly diagnosed we can share on a broader scale?

Because of the support in our growing community, health coaches, webinars and annual patient meetings, you will meet people who can help you learn new positive coping strategies. These new tools will allow you to continue your own movement, becoming more and more resilient along the way. You will internalize the newer and more positive coping mechanisms, and hopefully leave behind older, strategies that are no longer working.

The point is that you WILL find yourself feeling and presenting yourself differently in this world. When you calmly and rationally respond to someone in a new way (rather than reacting), your response may even change how the other person responds to you – and others – in the future. You will gain momentum and move forward in your personal journey.

As I write this column, it is a typical colorful Pittsburgh Fall. Some trees are still green, some have lost their leaves and are bare, and others are continuing to change colors and are absolutely glorious.

Practicing mindfulness and being “in the moment” allows one to just watch and enjoy nature with a combination of awe and appreciation. I’m not a personal fan of cold weather and bare trees, I know we will have winter wonderlands soon, with freshly fallen glistening snow – on the ground and on the trees. Everyone’s personal journey moves forward and changes just as the seasons change and cycle.

During your life journeys there are choices to make and different roads which can be taken. You can take the road most often taken or take the one not usually taken — neither is correct or incorrect. Just remember that there are always choices. Also try to remember that road that seems most “safe” may not be and may not help move you forward. Everyone makes mistakes, because humans are not perfect. Mistakes help people learn. Moving out of your comfort zone is not easy; it is a choice, and if you choose to stay on the same seemingly “safe” road, that is also a choice. Please let this last point sink in. DOING NOTHING IS A CHOICE.

Yes, life is a journey, but as you travel through, remember this quote: “What lies behind us and what lies before us are tiny matters compared to what lies within us” (Ralph Waldo Emerson). If you are reading this article and have gotten this far, look within yourself for that extra strength that may seem to be eluding you; it doesn’t always come from others. Maybe you just need to look a bit harder within. And, do not be afraid to ask for help.

Happy holidays. Try to start a new tradition this year. Tis the season to give – not just money, but of yourself. It will make your own personal journey more interesting and also sweeter, and by reaching out to others you will be making a far more important and satisfying contribution.

It’s a pleasure to be here with you all today, and an honor to take the helm, along with our CEO Will Zrnchik, at what I believe is an inflection point in the Foundation’s growth. I wanted to share some sentiments that I hope will guide and enrich your experience this weekend. For some time now, I have been thinking about what it means to be a citizen of the IPPF.

I am not a patient. I am a family member. I am involved with this Foundation because I care. I don’t want anyone to go through the pain and suffering I saw my mother go through. I know from seeing her and other patients that physical discomfort and pain are significant, but even worse is the loss of confidence that comes from feeling like you are a shadow of your former self, feeling alone and uncertain, and finding that even people who you thought could help – like your family doctor — may not be familiar with the disease. This foundation can help. Remember the people sitting next to you: they can help. And when you feel less than yourself, don’t give in.

Once again look around: these people can help. The foundation can give you a community of patients, caregivers, doctors and researchers. As you get control of physical pain and psychological stress, you will see a light at the end of the tunnel and eventually make it outside, and although the world will be different than what you had previously known, it is bright and it is happy. Now you’ve earned … your badge of courage, your stripes if you will, but to develop as a citizen of the IPPF community, you now need to look back and help others in need who still only see darkness. Shine the light down the tunnel, offer words of encouragement from a soothing voice and lend a strong hand to pull your fellow traveler from the tunnel and let them see the bright of day. Show them what remission is like and how they might get there. Even more, be a catalyst for positive change at the community level whether it is fostering research, helping raise funds, or educating doctors and patients.

I see all of the activities of the foundation coming down to four imperatives:

  1. We are trying to improve a patient’s quality of life — skin care, eye drops, puréed foods, emotional support.
  2. We are trying to reduce the length of time it takes to diagnose patients. This comes from educating dentists, doctors and nurses.
  3. If we can support research on disease flares, we might lay the groundwork for an academic institution or company to develop tests to predict emergence of flares. In fact, this may be a more pragmatic approach in the near term than going for a cure.
  4.  Ultimately we can support research and product development efforts that will someday bring us to a cure and make this picture disappear.

The foundation is about these four imperatives. Help us fulfill them for yourself and for all those around you.

If we come together and help each other, we can make an undeniably meaningful difference in patients’ lives. The foundation is a vehicle for your efforts. The foundation gives embodiment to our collective aspiration to help our patients and their families. I hope you will get involved.

My mother is a success story. Though she has to be vigilant, she is living a good life. So should all of our patients. For those recently diagnosed, stay strong – you will get through this. For those in remission, lend a helping hand to those still dealing with active disease.

For all of you, think about how you can catalyze positive change for the entire community. As you approach this weekend, ask yourself what you can do to be a true citizen of the IPPF. I wish you all the very best.