Bronchiesctasis and employment- is it possible?

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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!!sad

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9 Replies

  • Posted

    27, your story makes me feel extremely lucky that I "started" having a chronic cough in 1997 and was dianoses with Bronchiectasis (BX). I was 50. I probably had symtoms that no MD was picking up going back years with numerous bouts of pneumonia and bronchitis since age 12.

    I was diagnosed after seeking help for a chronic cough.I am a Register Nurse (and had never of heard of BX either) and continued to work until 2013 without much problem, and could have worked longer but wanted to do some other things.

    As far work we have another person on our site that was diagnosed at an early age and has contiunued to work for many years.

    I dont know that this is your situation, but people have found ways to live with this in their own way, as I'm sure that you will. It's important to be positive of course; its your best option.

    Let the site know if you are making progress. I'm sure you will get other responces that may help.

    Russ

     

     

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    • Posted

      Thank you Russ - It is making me panic a bit now as every time I thought my infection flare-ups had calmed down, I would begin to explore employment options but would then have another flare-up. I seem to be in a vicious circle that won't stop. My concerns grew stronger when my manager (I volunteer for her team) admitted that she has wanted to give me projects to work on but I always seem to fall ill. I can't help but think that this could be a continious cycle if I do manage to secure a job; and how much of a lasting impression it would have on employers about me.

      It just seems shocking that those with illnesses such as ours doesn't seem to have much awareness even now, despite efforts to do so. 

      But thank you for replying!

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  • Posted

    There are certainly jobs that you can do.  I work from home as a Project Manager, this allows me to cough without anyone looking daggers at me thinking I could pass something onto them.  I can also go on mute when on a telephone call if necessary for the same reason.  I would say that the larger the company you can work for the better as when you are off they are better placed to back fill you than smaller companies.  I have worked 6 months out of the year on the last two years due to exasperations and / or scheduled IVs and my Company have been very understanding.
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  • Posted

    In this day and age of computers, e-mails, websites, and internet more and more people are finding jobs that can be done from your own home, on your own time.

    I worked at a hosital (an accountant), half the stuff I did, could have been done on the computer at home with access to the hospital accounting system. I know that some hositals have coders (coding medical procedures for insurances) that work from home.

    I would amagine that there is a lot more jobs that can be done at home. That way on days that your not feeling good, don't work. And make up the time when you do feel good. There should be jobs out there that have flexable hours.

    Having an understanding boss (company) helps too.

    Good luck, Beth

     

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    • Posted

      Thank you Bethan, I guess I now have to figure what transferable skills I can use from a teaching degree.

      I'll let you know how my search goes smile

       

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    • Posted

      Here in the states, there is a lot of online classes thru colleges and universities. A lot of working adults or parents with young children take these classes.They would need teachers to lead those classes. It's all done by using the computer. Tutoring is another option.

      I'm sure this is just touching the surface of what you can use your knowledge to earn a paycheck and still have very flexable hours to accommondate your illness.

      Don't lose hope, Beth

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  • Posted

    Russ here again. I did a short search of the inernet in the UK for online positions. I dont know if you have tried looking for teaching positions online, but there are jobs that I am seeing online at the first site I looked at.  Check out "Disablity Rights UK", if you haven't already. If this is censored you will not see what I was refering you to above; just check online for organiztions that help the disabled in the UK. They seem to be "right up your alley" as we say her in The Colonies. Keep your spirts high, none of us are alone on this site.

    Russ

    Russ

     

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    • Posted

      Thank you Russell, I will try that; its a good point you've made there. Im search I have been looking for jobs in general. I haven't look at job available for the disabled; I will try this. 

      Thank you!!!

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