Hubbard 1 (2017)

DEBRA UK ta ware kudade don nazari na tsawon lokaci na lafiyar kashi a cikin manya tare da recessive dystrophic epidermolysis bullosa (RDEB), wanda Babban Masanin EB Dietician Lynne Hubbard ya jagoranta a Asibitin St Thomas.

Duk da yake an yi nazarin yawan kashi a cikin yara masu RDEB, ba a gudanar da bincike a cikin manya masu EB ba, musamman na dogon lokaci fiye da shekara 1. Bincike game da yawan kashi a cikin yara yana nuna cewa yana iya zama saboda rashin haɓakar kashi, maimakon asara. Wannan damuwa ce mai tsanani kamar yadda zai iya haifar da ƙara yawan haɗarin karaya, musamman a cikin kashin baya kuma yana rinjayar motsi da kuma kyakkyawan rayuwa.

Bayanan da aka tattara a baya a cikin manya 34 tare da RDEB sun haɗa da shekaru, jima'i, tsayin daka da aka kai, Indexididdigar Jiki (BMI), da kuma duban ƙarfin x-ray absorptiometry (DXA). An sanya wannan a cikin nau'ikan shekaru daga shekaru 16 zuwa shekaru 35. An kuma yi rikodin shan Calcium, matsayin Vitamin D, ƙimar motsi, isa ga balaga da cin bisphosphonate.

Sakamakon da aka rubuta daga wannan binciken ya nuna cewa rabin mace ne. Kasancewa daure keken hannu yana da alaƙa da ƙara haɗarin osteoporosis kamar jinkirin balaga. Duk da haka, an gano cewa shan Calcium ya isa a cikin marasa lafiya 32 (94%), kuma marasa lafiya 2 suna da matakan jini mafi kyau na Vitamin D ba tare da kari ba.

Ƙimar da za a iya zana daga wannan binciken shine cewa motsi da kuma kai ga balaga ana samun su zama muhimman abubuwan da ke hade da osteoporosis a cikin manya tare da RDEB. Bayan balaga, manya masu RDEB waɗanda ke wayar hannu suna iya tara kashi kuma su inganta ƙimar Ma'adinan Kashi (BMD). Ga mutanen da ke da RDEB, kiyaye motsi yana da mahimmanci ga 'yancin kai da ingancin rayuwa. Ana buƙatar ƙarin karatu mai zuwa don ganin ko za a iya yin ƙarin don inganta motsi da BMD a cikin mutanen da ke da EB.