What Is Nail Patella Syndrome?

Sara is a professional I met online who had such an amazing story that I have asked her to share it with you. She is a wonderful inspiration.
— Holly
As a child, I dreamed of growing thumbnails. As odd as that sounds, I was born without a thumbnail on my left hand and with only about half of a thumbnail on my right. I remember asking my family doctor if I would ever grow thumbnails and being told “maybe”. I wished for them to start growing and dreamed of randomly meeting a plastic surgeon who would somehow give me thumbnails surgically. 
When I was in the 4th grade, I gave an informative speech on fingernails. On my poster I drew the lunulas as triangles (like all of mine are shaped), only to be told by my classmates that I was wrong — lunulas are half-moons for most people. Just not me. 
I had other issues growing up. My kneecaps didn't like to go up and down the way they are supposed to, choosing to go more side to side instead. And, every trainer and specialist told me mine were very small. I went to physical therapy to learn how to walk correctly in high school when my doctor was convinced my knee troubles were due to my toe walking. For my 16th birthday, my parents paid for me to get a set of sculpted nails to see if I could fake having thumbnails. Sadly, my left nail fell off within a few days and my right nail was ripped off in a tragic locker accident — it was bloody and painful! I have only worn fake thumbnails on my wedding day since. 
When I was in my early 20s, my mom (who is now a nurse practitioner) diagnosed me with Nail Patella Syndrome (NPS). I have since had to educate my physicians about what it is and what it entails. Lots of protein checks for kidney failure, numerous go-rounds with physical therapy for various joint issues, trying different chiropractors to try to find some relief, yearly eye exams to make sure I don't develop glaucoma, the list goes on and on. I have always been self-conscious of my lack of thumbnails. That never changed.
After being told by my physician that I could no longer work as a para-educator due the added stress it put on my joints, I embarked on a new journey. I wanted a career that offered me flexibility to be home when I needed to with my two children, allowed me to explore my creativity, and socialize with many people. While getting my hair done one day, I asked my future employer if a nail technician could be successful in our small-ish community. With her assurance, I went about convincing my husband that I needed to go to school to become a nail technician. Using some money I inherited, I enrolled in school to start my new career. 
I was so excited and worked extremely hard in school, asking questions, pushing myself to learn as much as I could. I had found my passion. However, I was always concerned about how clients would feel about someone with ugly thumbnails (or lack-thereof) working on their nails. Amazingly, I have found that very few clients comment on it. It honestly has become a way for me to educate others about a little known syndrome. While I have had to make lifestyle adjustments because of NPS, I am very fortunate to only have a mild case of it. Incredibly, many people do not realize they have NPS until they are adults. Thanks to Internet support groups, I have been able to connect with others who have NPS and share stories of how we were diagnosed and have shoulders to cry on when the pain and discomfort that others don't understand gets to be too much. I have yet to meet anyone with NPS outside of my youngest daughter, who doesn't have thumbnails in addition to other symptoms.
Which brings me to why I am writing this — as nail technicians we are not medical professionals. However, you do have intimate relationships with your clients. Many people with NPS wear fake nails to camouflage their lack of nails or abnormalities. Some of these people may not know that they have NPS! 
As you can see in this picture, I have no thumbnail on my left thumb. This is a typical looking NPS thumb.
Here is my partial right thumbnail.
And here you can see my triangle lulunas, ridges on the nail plate, the smooth distal joint at the end of my fingers, and the crooked pinkie finger. All of these symptoms are very typical of NPS.
Personally, I have not had luck with fake nails, but many NPS-ers do and may come to your table. I'm not going to lecture you about watching for lifting (the acrylic or gel would be applied to the nail bed), not overfiling, proper cleaning, or watching for allergic reactions. You are professionals who know how to do your job. I am here to ask you to advise that if you think a client has NPS to encourage her to ask her doctor about it. There are many health risks with Nail Patella Syndrome that need to be monitored. 
As I mentioned earlier, I am checked for kidney involvement annually — as many as 30%-50% of people with NPS will develop kidney disease. Open angle glaucoma is also directly connected with NPS. Tendons, ligaments, and muscles can be misaligned, missing, extras, or all kinds of funky in the joints, meaning that MRIs are strongly encouraged before surgery of any kind. This also can make working out difficult. 
As a nail technician, we are told to watch for various ailments and to encourage our clients to see a physician for treatment. Nail Patella Syndrome, also known as Fong’s Disease, is a little known syndrome. We are told that nails can be a window to our overall health, and this is yet another condition to be alert for. You could help a client understand why she is different from others, or better yet, you could be the one to encourage her to take care of her health. Both the kidney involvement and glaucoma can be treated when caught early — but many NPS-ers that are unaware they have NPS don't know to request those tests. And, if they already know they have NPS, they will be very impressed that you know about it. I know I have only met two people (both physicians) who had knowledge of NPS before meeting me. One was a nephrologist, and I was his first NPS patient, and the other was a geneticist we took our youngest daughter to see at Children's Mercy Hospital in Kansas City, Mo. Official diagnosis is done by a DNA test, however an X-ray of the pelvis showing Illiac Horns can also be used to diagnosed NPS. 80% of NPSers have these, and you can only have them if you have NPS. Often times, lack of thumbnails and triangle lunulas combined with small or missing kneecaps are enough for physicians to diagnose Nail Patella Syndrome.  
If you would like to read more about Nail Patella Syndrome, please feel free to look at this website: www.npsw.org. If you have any questions that I may not have addressed, please feel free to ask me! I am not an expert by any means, but am willing to share any information or knowledge that I have gathered over the years. You can contact me at [email protected] or on Facebook Sara Naaf-Nail Tech.
— Sara Naaf

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