Tags » Rare Disease

Complications: Tissue Expanders

I want to start this series with this story because when I tell my story to people about everything I’ve been through, I generally use this as a first example. 562 more words

Kelleighs Cause

Solving the mysteries of developmental disorders: The DDD study

By: Alison Cranage
Date: 16.10.18

A rare disease is one that affects less than 0.5 per cent of the population. There are about 7,000 known rare diseases and on average, five new ones are described in the literature every week. 1,489 more words

Sanger Science

Acceptance vs. defiance

I often struggle with the inner battle between ‘loving my daughter just the way she is’ and doing everything and all I can to improve on where she is today. 727 more words

Rare Disease


I awoke the morning after my last post to a phone call from my Anthem BCBS nurse case manager. In her thick New Jersey accent and usual matter-of-fact tone, she briskly informed me that the peer-to-peer review of my Rituxan claim request had been denied. 943 more words

Chronic Illness

I am not a mistake

I have a rare disease. I will never be “fixed” and I don’t want to be “fixed”. I don’t see my disease as an inherently bad thing and I don’t think there is anything wrong with me. 263 more words

Rare Disease

Prez of the #TeamNoSleep club

I don’t sleep well at all. And apparently Cowden Syndrome doesn’t either.

Today, I saw the Dermatologist and had a mammogram. FINALLY found out the thyroid/neck MRI was submitted and approved: it’s scheduled for 10/26/18. 121 more words


The joys of shopping for clothes with a rare disease

One of the worst parts of my rare disease has to be shopping for clothes. My joints and bones are unproportional thanks to my mutation. My shoulders are so big compared to the rest of my body so it’s extremely hard to find clothing to fit. 183 more words

Rare Disease