Events

Every day, our patient services team hears stories from our community about what it’s like to live with pemphigus and pemphigoid. From getting diagnosed to finding the right doctor to thriving post-treatment, many patients express similar frustrations. And yet, there’s a common hope that runs through many of the stories we hear at the IPPF.

Each week through August and September, we’re featuring a story that highlights a specific part of the patient journey. OUR HOPE is that by sharing stories from our community, more patients and caregivers will realize they are not alone.

Our second story in the Patient Journey Series comes from Rudy Soto:

My journey with pemphigus foliaceus (PF) began in 2009; however, my symptoms began in 2008. I have been in remission since 2016. It has been a long journey, and I have encountered many bumps and detours along the way. I would not have reached remission without the support from my wife, Jennifer, of 26 years, my family and friends, and the IPPF. 

When I was diagnosed, I asked many questions and felt alone. Why me? Is it contagious? Is it fatal? I felt deeply depressed and didn’t want to socialize with others in order to avoid the questions, stares, and worries about what people were saying about me. Unfortunately, I missed many of my daughter’s high school soccer games because of this.

Two years after I was diagnosed and on oral medication, my wife found the IPPF online. She noticed that there was a conference in San Francisco and wanted to attend. I was hesitant due to the lesions on my face. I didn’t want to be around strangers, but she convinced me to go. It turned out to be a great experience, and I discovered that I was not alone. There were other patients that shared the same feelings. Some had already reached remission, and some were looking for more information like me. 

While I was at the conference, I met a man from Hawaii who also was diagnosed with PF. We talked for hours, and I still keep in touch with him. When the conference ended, I was grateful that my wife encouraged me to go. I have now attended five patient education conferences, and I learn something new each year. After San Francisco, I realized I needed to control my disease and not allow my disease to control my life. “Can’t grind me down” became my personal motto. I try to do everything that I used to do before being diagnosed with PF, though I am careful. 

The IPPF has made a huge impact on my life. Staff members have provided me with information, and I was able to connect with a peer health coach (PHC). My PHC became a special person that I was able to count on. She offered words of encouragement and let me know I was not alone—she would be with me on my journey to reach remission. It was because of this experience that I decided to help others in the same way. I wanted to share my story, offer helpful ideas and encouragement, and make an impact on someone’s life. 

I reached out to the IPPF about becoming a support group leader in order to help others. This has made an impact on my community and raised awareness. And when I reached remission, that didn’t mean my work with the IPPF had finished. It meant I needed to work harder to continue raising awareness about pemphigus and pemphigoid. You are not alone. Continue to fight the fight and control the disease. Do not let the disease control you.

Give Your Share to Show You Care

Support patients like Rudy

Your donation helps patients like Rudy connect with the resources they need to live with pemphigus and pemphigoid.

Donate Now

Check out the rest of the Patient Journey Series:

Did you know that more than $10 billion in employer matching of charitable donations goes unclaimed each year? Employers typically match their employees’ donations up to a certain dollar amount per employee per year.  All funds not utilized by employees by the end of the calendar year are never distributed to charities.

Matching donation programs are a large part of corporations’ social responsibility initiatives. According to GreatNonprofits.org, many corporate employees do not know that their employer will match their charitable donations. As a result, billions of dollars that can go to deserving nonprofits toward vital social programs are never distributed. Workplace giving programs are responsible for about $5 billion in charitable giving each year, but greater awareness could lead to at least a tripling of that figure. Each year, the IPPF receives a handful of company-matched donations. Of the 623 donations received in 2015, 12 donations (or 1.9%) were matched by employers for an additional $1,250. Imagine if that number were 5%, 10% … or even a lofty 25%?

To help our donor community maximize their gifts, the IPPF has added the ability to search and see if your employer has a matching donation program through DonateDouble.com. To see if your employer has a matching donation program, check the box next to “Would you like your employer to match?”  Find your employer in the list and enter your work email address. That’s it!  DonateDouble is an end-to-end employer matching service. By actively managing the match process, DonateDouble minimizes work donors are typically asked to complete by their employer.  For example, when required by companies, DonateDouble auto-fills match forms and sends them to donors for e-signature.  This also minimizes the effort for the IPPF by organizing and driving the match process on our behalf.

When you make your next donation, please “Check the Box” and see if your employer is on the list. You can also contact your HR department for assistance. If you have any questions, feel free to call the office and speak to Monique, Noelle, or myself. You can also email us at info@pemphigus.org.

Thank you and let’s “Check the Box” in 2016 to maximize every dollar donated!

We have a day for giving thanks. We have two for getting deals (Black Friday and Cyber Monday). Now, there’s #GivingTuesday, a global day for giving back. On Tuesday, December 1, 2015, nonprofits, families, businesses, and everyday people around the world will come together for one common purpose: to celebrate generosity and to give. #GivingTuesday leverages the power of social media and the generosity of human nature to bring about real change by encouraging and amplifying small acts of kindness.

You donate, share on your social media outlets, someone else donates, and the cycle repeats all day long.

It’s a simple idea and it’s easy to join in. Here’s how #GivingTuesday works:

On December 1, tell your story on Facebook, Instagram, and Twitter about why you contribute to the IPPF and how your friends and followers can too. You donate, share on your social media outlets, someone else donates, and the cycle repeats all day long. It’s important that day to use the hashtags #GivingTuesday #healourskin and #putitonyourradar so that we generate a groundswell of support and awareness for the IPPF.

Why is the IPPF participating this year? Because we’re ready to make this one-day event a success. The IPPF’s social media presence has skyrocketed thanks to: the hard work of Noelle Madsen (IPPF Patient Services Coordinator); the regular Facebook and Twitter activity of our Peer Health Coaches (March Yale, Mei Ling Moore, and Jack Sherman); the growing footprint of our Awareness Campaign; and last, but certainly not least, the participation of our P/P Community.

Last year, #GivingTuesday raised more than $53 million for nonprofits around the world. That proves the explosive power of social media sharing (liking, sharing, retweeting, etc.).

I ask you to remember the IPPF on December 1, 2015, and be a part of #GivingTuesday. Remember to use the hashtags #GivingTuesday #healourskin #putitonyourradar to help us keep track of our community’s efforts.

As a Peer Health Coach with the IPPF, I am often reminded how fortunate that I am to be able to speak with so many individuals who lives have been affected in so many different ways from Pemphigus and Pemphigoid. I am able to take these collective experiences and pass them on to others in the form of recommendations, suggestions and advice. Even more amazing is the fact that the IPPF has four Peer Health Coaches doing this simultaneously!

This year your coaches have collectively worked with over 200 people answering questions, looking for physicians, helping with problems, providing educational information and providing peer support. Your coaches often discover fantastic “pearls” of information and have become great resources for all of us managing our conditions.  To help pass along some of this great information we have created “Coaches Corner”, where your coaches can share knowledge about Pemphigus and Pemphigoid to help you improve.

Recently, I had some one ask me about being a blood donor which was something that I had done regularly prior to being diagnosed and had often wondered if I would be able to do it again. I found that according to the American Red Cross, you are not eligible to donate blood if you have some types of generalized autoimmune disease including systemic lupus erythematosus and multiple sclerosis (Since Pemphigus is so rare it is not mentioned). They also provide the following guidelines:

  • “To give blood for transfusion to another person, you must be healthy,
  • be at least 17 years old,
  • weigh at least 110 pounds,
  • and not have donated blood in the last 56 days.”

“Healthy” means that you feel well and can perform normal activities. If you have a chronic condition such as diabetes or high blood pressure, “healthy” also means that you are being treated and the condition is under control. Other aspects of each potential donor’s health history are discussed as part of the donation process before any blood is collected. Each donor receives a brief examination during which temperature, pulse, blood pressure and blood count (hemoglobin or hematocrit) are measured.”

So based on those guidelines, I would not recommend giving a blood donation unless it were for your own use. I would, however, check with the local blood collection agency you are considering just to make sure.

Although I was slightly disappointed with what I found because I was hoping that I would be able to give blood, the knowledge that I gained by doing a little research was helpful. I also found some satisfaction in knowing that I can donate blood to help with Pemphigus and Pemphigoid research. Perhaps that is the best way to donate blood as someday it may lead to a cure!

Thanks for all your support,

Marc Yale
IPPF Certified Peer Health Coach

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