When Nicky was born I was told of anemia being an issue with RDEB (Recessive Dystrophic Epidermolysis Bullosa). With this knowledge I gave him Ferrous Sulfate supplements as suggested by his pediatrician thinking that would fix it, but somehow I was unaware of how serious anemia could really become.
It wasn’t until he was 7 years old that he was tested for iron levels and we found out his levels were so low they were “borderline lethal”. Talk about scary. It was then that we started a routine of giving him iron and blood infusions that continues ’till this day. Why blood? Because over time his blood loses the ability to absorb iron so by giving him a fresh injection of good blood helps his body re-absorb iron as it should.

I was told by many Doctors that the reason why RDEB patients are anemic was because of the “blood loss” in the wounds. I am posting a photo here to illustrate this.


This is a wound on Nicky’s armpit. It’s one of those weird wounds that just “weeps”, so to speak, but it is rare. Most of his wounds do not really bleed like that. I often wondered about this explanation of why Nicky is anemic, but I found one just recently that explains it really well…

“Anemia in RDEB is caused by the increasing demands of the body for blood to try healing the wounds”.

I loved this explanation! So, the anemia at the end of the day is not caused by “blood loss” per se (although for sure it contributes to it), but by the demands of the body for blood to try healing the wounds. I also read that inflammation inhibits red cell production and diverts iron away from the bone marrow to the liver and spleen. Hence, anemia is a side effect of all the work his body does to heal his wounds.

The anemia also explains why Nicky’s skin that surrounds the wound is so “white”. The reason why of that is two-fold though.
For one, Anemia is a condition in which the body doesn’t produce enough red blood cells, which causes paleness.
For two, Nicky is caucasian, both his dad and I are very light skinned, and because Nicky’s skin is mostly bandaged and he spends most of his time indoors, it has no chance to be exposed to the sun.

Nicky does not go outside much because he gets hot quite quickly, and a sunburn would be devastating. He’s pretty happy getting vitamin D supplements to make up for it, and prefers being in an environment where the Air Conditioned is present or/and he has a fan pointing at him all the time. Nicky is always hot. Sometimes I  wonder if that has more to do with the bandages or the work his body has to do with healing wounds. At any rate… that is why his skin is so pale. It goes with the territory of the life he lives with the condition he has.

I hope this post helps someone understands more about one of the side effects of RDEB,

Love & LIght,