Parry-Romberg News Reel

Medical Breakdown


Published / by Lucille Ray

Dear Friends,

We were provided a beautiful day for our May 7, 2011 PRS Walk for Awareness in Indianapolis.   Our group members wore navy and white shirts which carried our message for AWARENESS, EARLY DIAGNOSIS, TREATMENT, EDUCATION, AND  RESEARCH.  Many thanks to all 5K walkers and mini-marathon runners.

A recent phone call from Cytori Therapeutics has provided some very exciting news about a new technique for restoring facial soft tissue loss.  This excerpt from a recent communication by Molly Carter, Associate Director explains the process.

Cytori makes a device which enables autologous cell-enriched fat grafting. This technique uses a patient’s own cells to correct areas of soft tissue loss. During the procedure a patient’s adipose tissue is enriched with their own stem and regenerative cells and then the cell-enriched tissue is used to augment areas of the body where volume has been lost or where there is asymmetry. With traditional (non-enriched) fat transfer, the transplanted adipose tissue is often absorbed within several months of the procedure but data has demonstrated that the addition of the stem and regenerative cells may help the transferred tissue to persist for years. Physicians in other countries have used this procedure to successfully treat numerous patients with PRS and we’re working to make this procedure available to patients in the United States. We’re in the process of applying to the FDA for Humanitarian Use Device designation for the technology so that we can conduct a U.S. clinical trial to evaluate if this technology can be used to reliably correct the facial soft tissue loss which can be caused by PRS.

Cytori  has asked our organization, Parry-Romberg Syndrome Resource, Inc.,  for interest in advocating this new therapy.  We hope to learn more in the near future and will update members when ready.

The 2011 National Patient Education Conference sponsored by the Scleroderma Foundation will take place July 8-10 in San Francisco.  Linear or Localized Scleroderma is often diagnosed as an overlapping feature in PRS patients.     Registration is available online.

Thank-you to all of our readers, friends, and support  people.  We hope you’ll stay in touch with recent PRS newsworthy information.

Crystal McDowell