Hello . My name is Maria Hernández and this is my story .
I am a 43 year old mother of two from California . I was diagnosed with PV in June of 2017. I was scared , in pain , and neeeded guidance . I immediately joined a Facebook group for PV members . Through this group I learned about the IPPF. I was glad I did !! I was immediately approached by my peer coach Mei Ling Moore . She is a amazing . She emailed me with resources and tips for my condition . She made herself available and even called me personally to get an update on my progress . She constantly posts about informational seminars or news about our condition . She guided me to a link on IPPF to find a specialist in my area and I was able to get the proper care from people who know about my condition .
Fast forward to a year later ....I’ve been on Prednisone for over a year and have had two Rituxan infusions and I’m blessed to say I’ve been blister free for 10 months now !! Thank you so much IPPF and our peer coaches
First attack in mouth can't eat any with this and then slowly slowly spread the whole skin of my body.. Docter took my left hand meat cut for biopsy and dignosed pv. Then start 40 mg steroids and 100mg Imuran daily.. 1 year control then 1 year after again flars up and start steroid infusion two years continue this process and finally start rituximab 2000 mg 500 mg each infusion.. So now I am good
10 years ago, my dad was diagnosed with Pemphigoid, when I was only a junior in high school. It was an extremely scary and difficult time for my family. My father, who was a restauranteur , went from working over 50 hours a week, to barely being able to get out of bed some days. Looking back, it shocks me to think about how quickly his health declined and how sick he was. Fortunately for my dad, it only took him 5 months after seeing 5 different doctors to get a correct diagnosis. However, for most patients it takes at least 10 months and at least 5 doctors before they get a correct diagnosis. During those 5 months of unknown diagnosis his disease progressed and sadly he lost vision in his left eye. After his diagnosis, my dad felt very alone and scared. He felt as if no one knew what he was going through and wanted to find resources to educate him more about the disease. This is when he found the International Pemphigus and Pemphigoid Foundation (IPPF). The IPPF has provide not only my dad, but my whole family with valuable resources and connections with other patients and their families. My dad was able to talk to a Peer Health Coach, which provided him with the comfort and support of another patient who knew exactly what he was going through. He has also able to attend several Annual Patient Conferences and support group meetings to actually meet others who have the disease. The IPPF provides so many valuable resources to not only patients and their families but also to doctors and those in the medical community. I am so thankful that my dad became part of the IPPF community. Any patient, caregiver, or family member who is connected to pemphigus or pemphigoid should contact the IPPF for support.
I had first symptom of Pemphigus in late 2001. Was misdiagnosed for five months and then started on meds. Took ten years for remission to happen.
When I looked on the Internet for information, hardly anything existed -- but I did find the pemphigus foundation and then saw that they had a local support group. If it wasn't for the IPPF (which is what it became), I would not have had the emotional support that I needed for this very scary experience.
The IPPF also sent me great information and a doctor referral list so that I could find the best dermatologist to treat me. If it weren't for this organization, I would have been a basket case but they helped keep me sane and let me know that I wasn't alone.
I also attend the Annual Patient Conference that they have and get to meet the experts on this disease and meet other patients and the IPPF staff, BOD and MAB. Always informative -- and fun! You don't feel like a patient there -- you're a person having a good time!