Wear your green to raise awareness for those we love and care for! 💚

Failure to thrive. Goodness I hate that sentence and how much it has impacted our lives. Every time I hold my iPhone I can’t believe my baby was barely bigger than the phone in my hand. He was born one month early in a terrifying delivery. His blood pressure had dropped and so had mine. I remember as my eye sight began to fade away and doctors rushed in, they mentioned emergency C section. I tried to grab my partners hand and tell him “get him out- save the baby”. Luckily I was nauseous and my OBGYN told me to push as I got sick. Seconds later he was born. The sense of relief we felt. That he weighed just enough he could be placed in our arms. The high of knowing I did it and didn’t need an emergency c section. The memory of my partner chugging apple juice from all the stress. 😂 I am one of the peopel who hate the WHO growth chart or at least we do. You know why? Because it is so hard to see that no matter how much food your child takes in, they are still below that stupid line. We rejoice that we finally hit the weight growth chart while sending love and support to families still struggling to get there.

Small things that are big things when you live with chronic illness" -l ●Someone 'checking in' on you. ●Being believed. ●Someone noticing when you are tired. ●Getting out of bed and showered. ●Comfy clothes that don't need ironing. ●Someone checking accessibility before booking. ●Someone picking up your prescription. ●When out in a group, waking at your pace. ●People listening vs telling you what to do. ●I saw 'this' and thought of you. ●Cards and thoughtful little gifts in the post. ●Non-physical compliments. ●Meeting people going through similar things.

This month is dedicated to raising public awareness of the complexities of chronic pain. Currently, pain treatment is under threat for many who need it. The NICE guidelines are changing and it’s a frightening time for chronic pain patients who rely on pain medication to be able to function have any quality of life.

What is a rare disease? A disease is considered to be rare if it affects 1 in 2,000 people. Rare diseases usually have broad symptoms that make them difficult to diagnose and treat. How many are affected by rare diseases? 3.5 to 5.9% of the global population suffers from one of these diseases. 72% of them are genetic. Roughly 300 million people are living with rare diseases. Here are some diseases considered to be rare. Ehlers-Danlos syndromes Arachnoiditis Mast cell activation Tarlov cysts Marfan syndrome Guillain-barré Multiple sclerosis Are these diseases truly rare or are they underdiagnosed? Although these diseases are considered rare to the rest of the world. We know how common they can be. Ehlers-Danlos syndromes are underdiagnosed and can take decades for a proper diagnosis. Tarlov cysts are challenging to diagnose due to their ability to mimic other illnesses.