The story of Jo
I was diagnosed with pseudopseudohypothyroidism, or the more common name is progressive osseus hetroplaisia.
I have had this disease all my life but was diagnosed officially 5 years ago. I have seen specialists and professors in various hospitals for clarification of the disease but from the start I was made aware that this is an extremely rare disease to have, at the time of being diagnosed myself and another person in the UK were affected.
This affects me because if my body goes under any trauma whether a knock or a bruise, a lump will form under the skin and will never disperse. Wherever the trauma happens on my body a lump will appear under the skin, which is a cluster of calcium deposits which are inoperable.
These lumps gradually get bigger over time and affects my joints and my general wellbeing as weather affects them; when it’s hot they swell and when cold they throb.
This is very much an invisible disability which has a massive impact on my life. When I have a bad period I need walking aids because my legs are very weak and throb.