Saturday, 27 May 2017

We Beat It!!

Josh is 98-100% better 3 1/2 years from quitting steroid use. He still gets the odd mild flare which causes dry skin and he copes with this by using a moisturiser. He still gets the occasionally itchiness but none of the deep excruciating bone itch that he described in the early stages. He has increased his food choices and can eat a variety of foods he wasn't able to consume. He has even had milk without reaction. We believe his allergies may have subsided along with his TSW. We need to get this first confirmed with a doctor so that we may post back again to confirm whether his allergies have truly gone.

Photo Bottom Left = Mar 2014, Bottom Right = Apr 2014, Top Left = June 2014, Top Right = Aug 2016

He passed his grade 5 drums and is currently studying for grade 6. Drumming really helped with distracting from his itchiness and now he loves it. He is also getting on with school and has coped well with secondary school. He suffered bullying at the beginning - he was called "scabby" which hurt his feelings. Now his skin has subsided and he has gained confidence, he can cope with any nastiness.

It will probably take another year or two before his skin is 100% - but I'm not sure how long it will take for him to heal emotionally, and whether this episode has caused him lasting emotional damage. Time will tell. If I was stronger, and richer I could pursue this with the NHS and drug companies but I am not - I would prefer that we get on with our lives. We would certainly do our bit to help others but bottom line is TSW sufferers and their families are exhausted. Exhausted from lack of medical help, exhausted from lack of support, lack of belief. We need outside help. I hope that someone strong enough can take on this problem and win because we will be there to help and support.

If anything, more should be done for people who suffer severe side effects from the use of prescribed drugs - I wish there were an independent support system with private doctors who are willing to listen to patients with conditions that are not helped by medication and those that believe their medication may even be making them worse. So often people are told they are imagining their problems - they are not listened to or taken seriously. Just the act of listening can heal.

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