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Hi from a newbie
Hi my name is Becky, I am currently in work up to a stem cell transplant at Kings.
For six years I have been ill with various illness hughes syndrome, pulmonary embolisms, bronchiectasis . . the list goes on. . .
For the last few years more and more infections hence a bone marrow biopsy which revealed something id never heard of ' hypocellular marrow, monosomy 7 and GATA2 deficiency'
My transplant is planned for later this year depending on the many various things to sort first.
Its very helpful to have this forum with others going through/ gone through this life changing treatment.
For six years I have been ill with various illness hughes syndrome, pulmonary embolisms, bronchiectasis . . the list goes on. . .
For the last few years more and more infections hence a bone marrow biopsy which revealed something id never heard of ' hypocellular marrow, monosomy 7 and GATA2 deficiency'
My transplant is planned for later this year depending on the many various things to sort first.
Its very helpful to have this forum with others going through/ gone through this life changing treatment.
Best Answer
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Hi Becky and welcome to the Forum.
Sounds like you have been having a rough time. I certainly haven't heard of your diagnosis so maybe you could keep us updated from time to time and enlighten us. It looks like there is a plan in place for a transplant in the future. So good luck for that. Stay positive and all should be well.
There are lots of members on the Forum who are only to happy to share their experiences with you and listen to any concerns you have so keep in touch and let us know how you are doing. If you have any questions let us know, I'm sure if somebody can help you they will.
I had a stem cell transplant almost 3 years ago now for hypoplastic MDS, something I had never heard of at the time. The transplant was a success thanks to an unrelated donor form the Anthony Nolan register. There have been many ups and downs along the way and you are right to describe it as a life changing event but you will be fine.
Best wishes
Peter
Answers
Thanks yes my condition is a rare genetic thing although nobody else in the family as far as I know have had anything like this, the hope is a transplant will cure most of my illnesses as my bone marrow and immune system are already starting to fail me. My transplant will also be from an unrelated donor from the wonderful anthony nolan register.
My head is swimming in questions but am sure lots are already answered in this forum
Its good to hear of peoples success with treatment
Best wishes
Becky
I echo Peter's welcome to the forum and hope you find the support you will get through here useful.
It sounds like you have had a few challenges already with the conditions you've had and I hope the transplant helps resolve some if not all of them. I haven't heard of most of the conditions you mention and hope you'll tell us more about them and the ways they affect you. They sound fairly rare, but we may at some point have others with the same or similar conditions so it may be useful to share more information if you're willing.
The more I read about stem cells the more it seems they could be used to treat more conditions than they already do, and I'm sure in years to come we will see more developments for stem cells to perhaps be used in different ways besides treating blood cancers and disorders.
Good luck with your transplant when it happens and please keep us updated as things progress, and of course call in and ask any questions you may have.
All the best,
Steve
Thank you for your reply, yes a lot of my illnesses are rare or not known of by most people much like some of the blood cancers people have in this forum.
Im happy to share more info, Hughes syndrome (antiphospholipid syndrome) is an autoimmune condition which affects the blood and causes clotting in my case pulmonary embolisms (lung clots) treatment for this is blood thinning medication such as warfarin the illness affects the immune system in many ways.
hypocellular marrow, monosomy 7 and GATA2 deficiency as far as i know are a blood disorder caused by genetic defects. This part of my illness is causing bone marrow abnormalities, infections etc. If I didnt have a stem cell transplant my health will continue to deteriorate and most likely develop into leukemia/ MDS in which case a transplant would no longer be viable for me. I think my consultant said about 50 people a year are diagnosed.
Pernicious anemia - b12 and folate deficiency
Bronchiectasis - COPD scarring in lungs causing widened airways
Raynaud’s - affects blood supply to toes and fingers triggered by the cold etc
Lymphoedema- causes fluid swelling in legs . . . . . .. . . the list does go on a bit!
The way these illnesses have impacted on my life have been a struggle but you have to make the best of what you can do, I am constantly tired and in pain most days. I manage to work part time but would love to be able to work full time again one day.
Also I have found illness impacts hugely on social life as you cant make plans and if you work one day the next you know you will be too tired to do anything etc
This all started when i was age 22 im now 29.
I will keep popping in with updates and am finding the forum most helpful
Best wishes
Becky