Meralyn

Hi, my name is Meralyn, I'm 42 and I've had scleroderma for as long as I can remember... I was born with Oesophagael Atresia/Fistula which was corrected at birth. My hands have always turned purple, then white when exposed to the cold or even when I'm nervous. At 12 I developed calcium deposits on my elbow after falling from my pushbike. I visited a specialist about these 'lumps' but to no avail... they put me under a general and scraped the deposits away... the recovery was very painful.

For 26 years I lived a 'normal' life, when at 38 I was recalled back to the Oesophagus clinic for an overall adult checkup... that cold morning saw me arrive with purple fingers at which the doctor exclaimed "Reynauds!" "What!?, there's a name for this?" The whole world opened up... my puffy little purple digits had a name... I was so happy.

My next medical visit was for a series of test, poking, proding... Diagnosis: Scleroderma CREST, Pulmonary Hypertension, Hypothyroid with an added dose of HEP C for the Liver!! We treated the Hep C with a 6month course of Interferon (during which I worked Full-Time and organised my wedding) and am pleased to say that for 2yrs the viral count is indetectable. yay! I'm on a daily dose of Losec 20mg for mild reflux, Diltiazem 180mg for the purple hands, Warfarin 3.5 to thin the blood, Thyroxine 100mg to help the thyroid and for the pulmonary h/tension I'm taking 10mg of Ambrisetan. I can walk forever as long as it's flat... an incline sees me taking very slow baby steps. My hands still operate well but my ability to hold things tightly is diminishing slowly.

I can't thank all the medical professionals enough... those in Melbourne at St.Vincent's who worked with the initial diagnosis and treatment, and now in Sydney, the staff at the Heart/Lung Clinic at St.Vincents who I've worked closely with while trialing the Ambrisetan, and Dr Helen Englert at Westmead Hospital who is always a delight to visit.

I'm living happily in the Blue Mountains with my husband and dog, teaching myself sewing & embroidery and keeping warm with Oprah!

mikhala@ozemail.com.au