APLASTIC ANEMIA (AA)

PURE RED CELL APLASIA (PRCA)

MYELODYSPLASTIC SYNDROME (MDS)

PAROXYSMAL NOCTURNAL HEMOGLOBINURA (PNH)

 

I (Coby) myself also am an PRCA patient

So I thought it was a good idea to put some information about the disease on the internet.

There's not a great deal of information on the net about these diseases.

I must make clear that I'm not a doctor and

I write from my own personal experiences since I was diagnosed.

I've also put some links to other sites where you can find a lot more information.

AA, PRCA, MDS & PNH are all bone marrow diseases.

All the diseases are rare (I've been told) and can be very serious.

The  diseases are different but have almost the same symptoms

that some people can be confused in thinking that the various diseases are the same.

In many cases there's the severe anemia andthe symptoms for that are:

TIREDNESS - DIZZYNESS - HEADACHES -

BREATHLESNESS - HEART PALPATATIONS- PALE SKIN

There are a lot more symptoms, which can vary for each patient.

Often you have a very low HB so you need a blood transfusion.

The blood transfusion needs for various patients can be once a fortnight to twice yearly

There are also medicines that suppress the diseases.

Unfortunately the medicines are not effective for all patients.

As far as I know there's no cure.

It is possible that the disease can go into remission,which means it can stay away

for as long as 5 years and on some occasions even longer

It's also possible to have a BMT (Bone Marrow Transplant)

But that's something you have to discuss with your doctor.

And if this isn't enough, there are complications with all this, such as

HEMOCHROMATOSE (IRON-OVERLOAD)

When you have had a lot of blood transfusions you

mostly build up an iron overload which can become dangerous

 if too high, so you must get rid if it some how.

There are drugs for that but the easiest way to get rid of it is

VENESECTION (BLOOD LETTING)

That's if your condition is stable with your HB.

They do that once a month or more often if possible.

It is the quickest way to get rid of the excess iron according to my doctor.

When you have AA, there is a possibility it develops into

 MDS and then into Leukemia sometimes.

What also can develop is a tumor on the Thymus (inside the chest) called,

THYMOMA

You have to ask your doctor more about that coz I don't know much about it.

So, the prospective aren't that great, but I lived with it now for 19 years and I know

some patients who also have one of these diseases for about that long too.

But I have to tell you as well, these diseases can get worse extremely quickly, even deadly.

It can be traumatic and often is, which is why I wish there would be a lot more info

on the net about these diseases so we all can read and learn what these patients have.

I have put in  two (2) links below, where you can find (a lot) more information.