Hi:D
My name is Henriette, im 18 years old and i come from Norway.
Because the information on MDS in Norway is so limited I thoought that maybe someone here could help me:)
I was diagnosed with ring sideroblastic anemia when i was about 14 years old. I have never been told that this is a form of MDS. Is it?
It was when I for some time ago was getting a bit worse, (lower level of blood, no energy and it started to appear blue spots all over mye ties) that I searched the internet for more information. I had all the symptoms of MDS, but did not know about the connection between MDS and RARS at that time. I asked mye doctor if i had MDS, and he answered ” no”. Later on I found a note where mye illness was written down, and i noticed the letters MDS. When I did some research on the internet it bacame clear to me that ring sideroblatic anemia is a form of MDS.
I have very little information about this, and because my case is uncommon since I am very young I cant find anything to compare myself to.
If someone with RARS or that know someone that has it could tell me a little more about the illness and how it affects their lives it would be fantastic:D
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