Harriet G - Things Change Quickly

Last time I talked a bit about me, and about why I decided to do this blog. The other blogs on this page give a great explanation of what Marfans syndrome is, so I don’t feel the need to explain it at great length. In summary, it is a connective tissue disorder that manifests in a variety of physical symptoms. The word variety is key. Everybody with Marfans has different symptoms, not one case is the same. It is absolutely vital to have all the necessary tests done, you do not want to risk something going undetected. Monitoring throughout development is also essential-things can change quickly, especially during adolescence. I should know-my family and I never expected that I would need back surgery. I have now had that done. I was told my heart surgery would probably only be done in my 20’s. I found out in September I may now need it in the next 12 months. It can be unpredictable.

The NHS is incredible. I dread to think how much money I have cost them! The scans, the x-rays, the consultations, the blood tests, the operation-the list goes on. I don’t know how we would manage without it. As much as I value it, it can sometimes feel like you are always looking ahead to the next appointment. I have to leave school at awkward times, and my mum and dad have to come out of work. It is important to keep your spirits up, and to realise how important getting the answers is. Knowing what is happening means you can make decisions. Doctors, and indeed all staff at hospitals do their best to maintain patient privacy, in every sense. Teenagers can be very self-conscious, and with such advanced scans and tests now, there is no hiding place. This can be hard to deal with, and it can feel everyone knows everything about you and your body. To anybody in this situation, remember, there may be no secrets, but you have a voice. If you’re not happy with the way something is being handled or you have any questions about what is happening with your care, talk to your family and talk to your doctors-they will want to know how you feel and what you want to say. There is plenty of advice out there to help, never feel you can’t take it!              

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