Help! 10 Years of Severe Pain and Hurts to Breath

Hi. My name is Heather. I am 42 and, unless I can raise funds, my future is to remain incapacitated and in constant Severe pain. This is a desperate plea for help please! I need life changing surgery but cannot afford it.

My son (9) and I both have autism and a rare condition called Ehlers Danlos.

Ehlers Danlos means that our collagen is faulty, so it affects every part of the body especially weak, dislocating joints, which can be painful but my dislocating ribs are excruciating.

Currently we are unable to live any sort of normal life as I am in so much pain that I cannot get out of bed most of the time.

I have recently been diagnosed with slipping ribs which means that some ribs have torn away from the cartilage in my chest and move around or pop out of my spine. They move around and can move over and under each other and get stuck which is excruciating.

Every breath I take feels like I am being stabbed in the chest and between my shoulder blades.

It had been getting worse for 10 years but, as it is very rare, no drs have believed me until now. I have been accused of the most awful things and either labeled as an attention seeker, drug seeker or that it is in my head. Those who do want to help don’t know what to do with me as there is no care pathway. They now want to reduce my pain medication but won't deal with the cause of the pain.

To get a dr to listen to me i had to pull a rib out of place and wiggle it around for the Dr to see!

It then took months and i went to see a surgeon who removed a long, sharp, bony growth from one rib, which had been stabbing me in the abdominal nerves, muscle and organs for years. I thought my troubles were over but the surgeon says that he has no idea how to fix the rest of my ribs, after promising me that he would.

There is so much to this story but I have had to prove myself at every turn and now I have run out of steam to fight for much longer.

My son has suffered hugely as I am in and out of hospital (pointlessly) and, due to the pain, can't do normal mum things or take him anywhere. He is scared and so am I. He is very good as he just has to sit in at home with me all of the time but he is missing out on his childhood and becoming depressed.

I need to prove to him that it will be OK and there is hope in the future.

There are 2 amazing surgeons in the UK who can help me but the wait is very long. As I have already waited patiently on the NHS for 10 years and been treated really badly for the most part as no one has heard of this condition and can’t seem to believe that ribs can do this.

I can’t deal with this pain any longer as the drs in charge of me won't/can’t refer for some reason. Probably because it is so rare and they don't understand or know where to go for help. They want to help but I’m assuming that no one has time to do a little research to see if my condition is possible.

Previous experience tells me that it will be years, if at all to get help on the NHS.

However, if i were to go private, I could have a consultation in August and hopefully the surgery soon after!

The surgery will give us my life back and we will be able to stop suffering in silence. My son would have his fun mum back and we could go on our fun adventures and woodland walks together.

Please, if not for me, then for my son. We would be hugely grateful for any donation towards this life changing surgery, however big or small.

If there is any further information that you would like then please, do contact me.

Thank you so much for reading

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