Porphyria - The Unknown Disease

WHY DO I HAVE PORPHYRIA ?

If you have just been diagnosed with porphyria, try not to panic!
I've had porphyria since I was conceived because I have a genetic form. I have been acute for 38 years, and I am now (58) years and I'm still around.

I would like to address a thought that so many people with porphyria
seem to have. I've heard this question at least a zilliontimes..(asked it
myself once)

"Why was I given this disease there is no cure for?"

I personally feel that we were given this disease because we are
strong enough to handle it.
       - Because we will do something about it.
       - Because we can do something about it.
                -We can build our web pages ---
                -We can write to our government officials---
                -We can educate the general public --
                -We can educate our loved ones--

Moreover, we as living and breathing porphyrics CAN and MUST EDUCATE even our Doctors about this disease.

There are so many misconceptions about this disease

                - It is NOT a mental disease.
                - It is NOT a RARE disease.
                - [Only a couple of porphyria types are rare.]
                - No you DO NOT have to descend from royalty.
                - No, sex is not a "trigger" of acute attacks.
                - No porphyria is not MCS but it can be
                  any one of the eight plus types of porphyria,
                  with the like symptomology of MCS.--
                - [A person with MCS can also have porphyria.]
                - No, you were NOT a bad person who deserved infliction.

We have this disease and we will overcome it. All porphyrics truly have to believe that ONE CAN OVERCOME porphyria. That does not mean a cure, but that means being able to have control over the disease in one's life. That means avoiding "triggers" and using PREVENTATIVE CARE. That means going into REMISSION.

And how does a porphyric do this?

Having a POSITIVE ATTITUDE about all of this, is what will get us
through it.

Fighting porphyria is not a "solo" act. We can't do it alone. As porphyrics and medical care professionals caring for porphyrics, we must work together to get this done.

Educating of our medical professionals about our type of porphyria is essential.

We must join together to win this battle. This truly is the battle of our lives. As well as for our lives. We must "arm" ourselves with medical literature on our disease and understand the specific of porph testing and PREVENTATIVE THERAPY.

We have been diagnosed with porphyria and we CAN handle it!

We all know that when you're first diagnosed that you are not thinking like this, but given a little time you will.

If you don't think of yourself as a strong person, you will change your mind on that opinion most assuredly.

Anyone who is porphyric and has been active for a number of years can tell you, it isn't all bad, and that they feel that they are a far stronger person and a far more caring person because of having faced porphyria.