The Romberg's Connection 2009 Survey Results

Accelerated During Puberty

Page 67. IV. Triggers (page 2 of 2) cont.: Accelerated during puberty
1. Please comment on the symptoms accelerating during puberty:
Changes in face, changes in color and more discoloration in affected area, more prominent indention in affected area, triggers, electrical impulses in brain, vision problems, mental problems, learning problems. Low grade fever and overwhelming feeling of being ill and tired. Extreme fatigue. Motion sickness. Intolerance to cold temperatures, very tough skin in all areas except Rombergs area where its thin. Changes in menses, constipation and abdominal pain depending on mood.
Noticed en coup de sabre during puberty, but had scalp lesion and hair loss at age 8.
If the tissue got hard in a few years only needed months and there were significant changes because of the atrophy.
It seems the atrophy progressed rapidly as son approached puberty. I know that PRS is less common in males and therefore don't know if this experience w/puberty is common among other male patients. We originally thought my son "just had thin skin" on the right side of his chin. But as I mentioned before, it was as he approached puberty that the loss seemed to progress more rapidly and become more noticeable.

From my reading of other's emails, it seems that many females affected by PRS discuss increase in symptoms during pregnancy and/or menopause. Seems to be a hormonal link.

I am not sure that the accelerating of symptoms during puberty has anything to do with puberty - my symptoms accelerated very much in my twenties too.
Progressed very slowly until 11-12 yrs., then accelerated from then on. We have other family members with other autoimmune diseases, not PRS.
As I got older the worse it became from what we (my family) can see.
Forceps birth??? Genetic???
It started and accelerated when puberty started... just seems that when she did start to have an intermittent period, is when it progressed faster.
Continued atrophy of bone and soft tissue on forehead and jaw.
The medication lost effectivity and he got more and more seizures.
Seemed to increase.
According to doctors my mother took me to in my teens, my assymetry started in early childhood. During my teens, my mouth pulled further to one side, my cheek started to thin, my eye lashes turned white and fell out, I started to get migraines and jaw clamping, the crease in my chin started to get very noticable.
Seems that this was the time it was most noticeable because of my rapid growth spurts and the effected tissue not keeping up.
Could notice slight deterioration in my face in my teens. Mostly when I looked in a mirror.
Mouth was sore much of the time. I used wax on the wires.
Continued hair loss.
Number responding = 18 / percent responding = 13% 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.