And…Three Years Later…

Well, this is embarrassing… A lot has gone on since my transplant back in 2013, and I promise to give a recap once I get a chance.  For now, I’d like to celebrate Rare Disease Day! This is the post that I put up on Instagram (@j.mura_designs):

It’s #raredisease day! Reading some stories on and came across a young girl’s story about dealing with #MPGN, the same rare disease that I have. I wish I could reach out to people, especially younger people who are dealing with this disease, and let them know that you are STRONG. You CAN do this, you WILL get through this, and like this girl realized later on, that you are HELPING others improve their lives in coping with this disease.

I was diagnosed at the age of 10 and know what it’s like to experience weight gain, mood swings, depression, fluid retention, migraines, sicknesses that last for weeks, numerous visits to the hospital, and the list goes on. It’s not exactly the easiest thing to go through when you’re a teenager and you feel like you’re alone in a never ending nightmare. I never really talked about my disease with a lot of people until I was older, and never mentioned the medications I was taking to my friends or people at school maybe because I was embarrassed? Was worried they might look at me like I’m a freak? Who knows but, luckily, I was fortunate to have the support group that I have in my family, and I had wonderful friends that accepted me for who I was/am.

To all the people in school who treated you differently, who name called you, to hell with them. They should be the people that motivate you to keep going in life, they are the people who have absolutely no idea what you have been through, how strong you are, and that you are someone 10x stronger than they are.

To all my rare disease homies out there, keep on fighting because you are a survivor! Be aware that you are rare and never give up hope. Also, remember to never lose your sense of humor, except maybe when you have a transplant, because laughing too much after surgery can sometimes hurt like a b*tch!

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