Fellow RPer Nadine Streit is in the process of launching a patient-driven RP Acupuncture Database to collect objective, quantifiable results from RP patients about the use of specialized acupuncture to treat RP. I reached out to her recently to find out more about her, as well as her goals and plans for this project. Have to say – I’m INSPIRED.
t’sIR: Where do you live?
Nadine: In northeast France, and soon in Paris.
IR: When were you first diagnosed with RP and how much vision do you have left?
Nadine: I was about five or six ears old. My mother took me to an ophthalmologist because I couldn’t find the stairs outside at night. Today, I’m 35 and I have about 10-15° of visual field left. My central vision is good except in my left eye because of a Macula edema.
IR: What got you interested in acupuncture for RP? have you tried it? If so, with whom and what was your experience?
Nadine As a patient, I wasn’t satisfied with the information provided by my ophthalmologist and as a physiotherapist, I thought that my patients should be better informed! Most of my patients felt better after following non-conventional treatment (for back and joint pain) like acupuncture and osteopathy, and I was surprised that these therapies weren’t recommended by the health authorities. Then, I decided to study health education and began my master research. I used my situation as a patient and analyzed myself. I compared what kind of information is accessible about my disease on the Iinternet with what doctors provide to their patients.
This is how I found many testimonials about a specific acupuncture treatment for eye diseases in the U.S. I concluded that it was impossible to estimate the credibility of these testimonials. Could a treatment exist that might help us without ophthalmologists knowing about it? This is why I decided, two years ago, to try the acupuncture treatment provided by Andy Rosenfarb. Since then, I have received six additional week-long sessions of treatment. For the time being, the vision in my right eye is stable and after each treatment session, my vision is brighter and I can see shapes and lights in my extreme periphery that I couldn’t see before (left and right eyes). This improvement decreases between treatment sessions and comes back after each treatment session. I always see less glare and I can read small characters more easily. Unfortunately, my edema is still there in my left eye.
IR: What made you decide to start this Acupuncture research database?
Nadine: I used this experience to continue my master research and question whether there is treatment available outside the health institution. I concluded that because non-conventional medicine is developed outside health institutions, ophthalmologists are not aware of the existence of this kind of treatment. As patients trying non-conventional medicine, we are the first proof of its possible efficiency.
IR: What kind of information do you want RP patients to send your way as it relates to acupuncture and their experiences?
Nadine: On an upcoming web site, patients following acupuncture treatment will be able to create their profile by answering a questionnaire, update the treatments they are receiving and post their results. They do not have to reveal their identity and they can choose a different name. I recommend that participants have regular optometry checkups and preferably at the same place. Also, it would be helpful if they carried out acuity and visual field tests after each treatment.
IR: What is your ultimate goal with this project?
Nadine: I want to know what the real results of this treatment are and I’m sure many of you want to know this, too, so that — if it treats our disease effectively — we can draw scientists’ and acupuncturists’ attention to the treatment and make it more affordable.
IR: How should patients submit information to your database?
Nadine: The web site should be created in the next few months. Until then, patients can contact me by email and follow the project on Facebook. Please contact me if you are interested in taking part of the project: streit.nadine@gmail.com or follow me on Facebook: RP Patient Evidence-Based Medicine.
Great idea – and a shout out to a fellow French resident! All the best to both of you and Happy Holidays!