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My Lymphatic Malformation journey

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Hannah Dunaway

My story with Lymphatic Malformation

I was born with a Lymphatic Malformation. (also known as Cystic Hygroma). LM only affects 1 in every 4000 births. Lymphatic Malformations are rare non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the Lymphatic system. I have both Macrocystis & Microcystic Malformations. (Mostly micro which unfortunately means my malformation doesn’t respond as well to treatments and options are limited). Macrocytic Malformations are large, soft, smooth clear masses under normal or bluish skin. Microcystic Malformations are presented as small raised lesions containing clear fluid. There is no known cause for this and it is not genetic.

Raising awareness about Lymphatic Malformation

I was diagnosed at my moms 22 weeks ultrasound. I was born unexpectedly at 32 weeks. I spent 5 months to the date in the NICU and had a feeding tube and tracheostomy until I was 12. Since birth, I have had 55+ surgeries and procedures and have spent the majority of my life in doctors offices and hospitals. I have the malformation primarily in my face, tongue, and airway. They bleed, flare and can be very painful. I used to feel so insecure about how I looked due to the Malformation but I now embrace my uniqueness. Kids could be mean and adults even meaner but it only made me want to advocate and educate even stronger. There is no cure yet but until there is, I strive to educate and bring awareness to those about LM.

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