The Romberg's Connection 2009 Survey Results

Starting During Puberty

Page 66. IV. Triggers (page 2 of 2) cont.: Start during puberty
1. Please comment on the symptoms starting during puberty:
The hair loss
Start age 11-12
When I first noticed my symptoms, I was a teen and had a darkening of skin near my mouth. According to Drs. who have seen my pictures of me as a child, they think that my mouth has always been crooked though??
Facial atrophy first became visible around the age of 11 and progressed for a few years, then stopping.
Diagnosed during puberty. At that stage I believe I already had atrophy to the face, back and chest. Began menstruating in late 2000.
Droopy eye lid and white patch of hair.
Dark circle under left eye at age 12, doctors thought I was anemic. Then after many doctor visits and at age 15 I was told that I had Romberg's.
Indentation down midforehead, also had severe acne, loss of bone in jaw.
First symptoms at age 10 - rapid progression at age 16 - 18 (not really during puberty but after start of puberty).
It's just that this is when it all started for her.
Also have ulcerative colitis, had the chicken pox at age 6.
Symptoms started age 19 years for me.
They started during puberty, but still think it has something to do with my car accident.
It became noticable at age 13. Only had 'smaller' right hand side of face and migraines. Facial pain, etc. started when I was 19.
Changes in face. Changes in color and more discoloration in affected area, more prominent indention in affected area, sever and debilitating migraine, vision problems, mental problems, learning problems. Low grade fever, extreme fatigue. Motion sickness. Intolerance to cold temeratures, very tough skin in all areas except Rombergs area where its thin. Severe constipation depending on mood.
My lip started to thin and my eye was droopy.
Number responding = 16 / percent responding = 11% of total respondents (143).

Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for a consultation with one's personal physician. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone.

Throughout this survey, when we use the term "Rombergs" or "Romberg" we are referring to: "Parry Romberg", "Parry Rombergs", "Parry Romberg Syndrome" and "PRS".

This is an unscientific survey designed to gather information from those who must deal with Rombergs on a daily basis.