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 consultation with one's personal physicians. 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. However, we are presently working on a listing of doctors with Rombergs experience.

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Princess Princess

Rebecca is now 12 years old and this is her story.

August, 2010
(Translated from German)

When Rebecca was 8 years old, we noticed a reddish-brown spot below the ribs. Assuming she has hurt there when she was playing, we tried various ointments to bring the spot to disappear, but we had no success. We were not concerned to this time, because it seemed as the spot was smaller and paler. Next summer, a 2 cent large bright spot came in front of her right ear, Rebecca told us that her earring would have caused this.

Some time later shiny white stripes appeared on the right upper cheek and now we decided to make an appointment with the dermatologist.

He looked at the changes of the skin, recognized a further change on the chin and proposed to take a biopsy.

It took four month before we finally had the results of the biopsy.

The dermatologist told me by phone "it is scleroderma and I would like to present Rebecca in the dermatological center in our city". No further statements from him and I was forced searching in the internet about scleroderma for the next days. I came to the conclusion that the proposed dermatological-center was not the right for the treatment of my daughter. Another parent, a member of a scleroderma-forum, gave me the advice that Dr. Foeldvari, Hamburg Germany, is a specialist for this disease.

Since August 2008, we are there in a treatment and after the stripe on the chin was deeper and wider and the atrophy of the affected side increased, Rebecca is treated with Methotrexate. At the beginning of the treatment she received additional infusions with high-dose Methylprednisolone every 14 days. That was a very tiring and stressful time.

Every 14 days Rebecca was in the hospital for an afternoon. The next day Rebecca doesn't feel well, so it caused many absences in the school. Rebecca was sent to the gymnasium at this time and thankfully she is a good student, so that she could maintain her good grades. But we were also lucky that the teachers always considered that Rebecca doesn't feel well on some days.

The atrophy of the face is slowly progressing and the lesion on the chin is wider and deeper. In addition, in July of 2010 another fine stripe occurred crosswise on the chin despite taking Methrotrexate.

Rebecca is still a happy girl with many friends and until today she has not heard negative comments about the changes in her face. But she still asked me whether there are any ways to compensate for the changes in her face.

Feel free to leave a message for Rebecca's parents at rombergs@hotmail.com.

All photos and text are the property of the families represented, and may not be used without their consent.

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