Name : Nicholas L. Fessas (Mother, Vasso)
E-mail : firstname.lastname@example.org
Child: 10 years old
Location: Adelaide, South Australia
Area(s) affected: Right ring finger
We first noticed a lump on Nicholas' finger several months ago, and since
that time, after hand X-rays, CT Scans and now a full Nuclear Body Scan,
Monostotic Melorheostosis has been diagnosed. The Nuclear Body Scan was
undertaken after consultation with our Orthopaedic Surgeon, Mr. Peter Cundy, to
ascertain if this was isolated, or if it was in other areas of his body.
Nicholas currently does not have any pain or problems with flexibility/use of his finger. However, the swelling has increased in that time.
We have just met with a geneticist, Dr. McGregor, from the Adelaide Women's & Children's Hospital, who is researching/consulting with other specialists overseas, to answer our many questions.
After reading other personal histories, on this site, I still have many questions: what will happen long term; will Nicholas' condition worsen; can he expect it to affect other areas; can he expect pain; will it spread and affect the growth of this bone; what can be done to increase awareness and research, to find a cure and better treatment?
The next step for us to is to continue research in consultation with our medical specialists, before making any decisions.
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