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Hi, well basically I have bronchiectasis which is a secondary condition stemming from a genetic defect from birth. Unfortunately, I was disagnosed with the genetic disorder when I was 9 (wasn't even told about the Bronchectasis side of it until I received a copy of my first clinical notes at 16 when I was tranferred over to adult care from paeds). Due to the late diagnosis damage had already started to occur. The battle for controlling the condition stemmed from 9 years onwards till age 15. This consisted of inhalers, nebulisers,physiotheraphy, oral and intravenous antibiotics and there was an instance for gene theraphy (but this ended up a bust as I was informed that I have a 'noval gene defect' that has not been seen before. I had a break from 16-18 when it was under control. By age 20 things went downhill fast (im now 27) I was at university at this time studying primary ed, this was a frustrating and somewhat torturous battle getting things under control again, however this continued for 5 years. I did get my degree but had to forgo the QTS as I could not maintain what little health I did have as I ended up with an infection. Since graduating I had a further 2 year battle with my health now with the added complication of having built up a resistance to antibiotics (as I had exhausted all the hospitals medication that are usually suited to treat bronchiectasis- we are now dabbly with the more rarer drugs- it is kind of amusing to watch when nurses come up to me and say Ive never even heard of this before. Its been a hard lesson for the doctors involved as well. Currently, I now have the bottom of my lungs permenantly damaged which is slowly spreading upwards. In between all these battles I volunteered and still do. But I now want to find employment. I don't like the idea of benefits and would preferably like to work on a salarid income (don't care about the size of the salary- a salary is still a salary!) even if it is part-time. I did start looking at employment and much to my dismay those with chronic long-term illnesses have a very low number of employment (according to a UN report) and on top of that here in the UK there are NO LAWS or Legislations protecting us or giving us the rights to employment (but there are in the states...). This has left me in quite a dilemma as I know that there isnt much support for us namely due to the fact that the public may not have heard of bronchiectasis nor have they heard of the genetic disorder I have (this is a fact as it is only now that doctors can say to me oh i've heard of it but I dont know what it is - I admire their honestly it is much appreciated!). Which begs the question what jobs can I do as working in a school/college/nursery setting is not a option due to infection risks. I DO want to work but which jobs are available that have a support system in place for those with long term ilnesses. Im only 27....surely there must be something!!
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