Issues severely effecting porphyria patients

[Guest guest]

I friend of mine by the name of Rose asked me if I would post this

information. I have been working with her for a couple of years and

she had come down with porphyria after her mold exposure.

KC

Hi KC

Can you help me now?

The people with Porphyria need to be heard, can you spread this

around to anyone you know.

Thanks,

Rose

Subject: ISSUES SEVERELY EFFECTING PORPHYRIA PATIENTS - Public

Outcry!!!!

ISSUES SEVERELY EFFECTING PORPHYRIA PATIENTS

I urge all of you that I send this to, to look into these issues and

see where you may be able to help us.

Can you write a letter to someone with a voice that can help?

Congressman? Hospitals? (us patients have written and written and

continue to write to get our stories heard, but we need all of your

help, our voice is not LOUD enough!)

Can you identify these problems while doing your own research to

verify that I am right about these issues?

Do you know a med student or other fresh mind that might need a

focus in life and is wondering where they can help?

What can we do as patients who are ill and have no voice without the

help from the public?

This is my public outcry!!!! We need your help PLEASE!!!!!!!!!!

American Porphyria Foundation - This foundation is supposedly set up

to help, but has not been helpful to patients for the following

reasons:

a. There are different types of porphyria, APF seems bias and

only focused on diagnosing and treating AIP.

b. Clinical Trials are impossible to participate in without

either being in an attack, or already having PBG levels 10 times the

limit of normal. Or if you do not have AIP you cannot participate.

c. Video and Emergency kits are not at all helpful to patients

and appears to " Toot the horns " of APF only. (video focus is on Mt.

Sinai and Ovations and not necessarily patient stories and awareness

of the disease) The Emergency kit was a stolen idea from a patient

so I have to say it is NOT helpful to steal patient ideas and not

give credit where credit is due. Great idea though if I do say so

myself.

d. Doctors listed on APF boards - Dr. – Dr. Bloomer in

particular.

i.

These physicians are involved in a " conflict of interest " involving

their involvement with Ovation and their promotion of Panhematin and

the positions they hold. This conflict of interest is noted in a

recent medical journal.

ii.

Every day patients are turned away by these physicians and told

that " it is unlikely they suffer from porphyria " without any further

explanation and after they have been told they have porphyria by

their own personal physicians after an illness and testing. In some

cases porphyria tests are not even ordered a second time to confirm

one way or another and the patient is abandoned and hopeless and a

few have committed suicide just in the last few years.

iii.

Many physicians cannot come to a cohesive conclusion on any given

fact dealing with porphryia. One US specialist says one thing and

another says different. Who is right?

iv.

Many specialists worldwide are becoming aware of our problems and

are taking note of what our specialists are doing (or not doing) and

are NOT impressed. Their solution is to have us send samples there

to them, this can happen but I need all of your help!! It is NOT as

easy as it sounds as Mariel knows because she tried to send samples

to France.

e. Levels considered diagnostic for porphyria according to Dr.

, are different than other ranges used for urine PBG testing

worldwide.

f. Panhematin – (blood product for acute attacks) Ovation made

serious violations pertaining to the promotions of this treatment

and we have every right to obtain and view the response they made to

the FDA regarding these violations (FOIA but I need YOUR help to

obtain these documents!!!). We have the right to see what steps they

took to correct the problem. I have to prove that it is in our

general interest as patients and we can obtain them. Ovation also

provides GRANTS to the APF.

Routine tests for porphyria are NOT being done at US hospitals and

are being transferred to commercial laboratories.(This just

discussed in Paris at a meeting, I have an email from a porphyria

specialist who alerted me that it is NOT going to get better in the

US if this continues) This means that patients are in the ER's

during possibly fatal attacks are ARE NOT BEING TESTED FOR

PORPHYRIA!!!!!!!!!!!!!! Even if they are documented to have been

diagnosed with having it!!!!! This is nothing short of Lunacy!!!!!

Testing and diagnosis has become a HUGE issue for all of us and

driving many to helpless thoughts of suicide. I have been trying to

get a clear diagnosis for over 10 years and I will assure each and

every one of you that I will make a LARGER AND LARGER STINK the

longer this takes. I have been to the ER thousands of times in acute

distress and have NEVER had certain testing done that would tell me

one way or the other if it were indeed porphyria and what type

(random urine PBG test). Instead thousands of other tests have been

run that cost thousands of dollars MORE than a routine porphyria

screening. I have positive test results for porphyria, but

apparently this means nothing because other tests were MISSED. I now

know more about the disease than I knew 10 years ago and have

prevented any further attacks by becoming familiar with

the " triggers " such as medications and chemicals. NOW I am being

told that I cannot get a PBG test done unless I am in an attack?

What am I supposed to do " TRIGGER " one?

Imagine you tell your referral doctor that you were hospitalized two

weeks ago with a heart attack, you want to confirm that indeed your

heart is alright and you can prevent any more from happening by

knowing that is indeed what it was. Well when you were at the

hospital, they only assumed it was a heart attack, no routine

testing was done and so they gave you a referral for further testing

to be done through a specialist. Now your referral doc says that you

need to: " come back when you have another heart attack and we will

test. "

There is a HUGE lack of concern (along with lack of knowledge) in

the medical community for porphyria patients and the care we

REQUIRE. The current " specialists " are retiring in less than 10

years and our future depends on those who will step up behind them,

if indeed they do and are aware of the need to do so.

Heme Arginate – Normosang (treatments for acute attacks)

a. BOTH have been clinically proven to be safer than Panhematin

for acute attacks.

b. In some cases they $1,000's of dollars cheaper.

c. Both have been used longer than Panhematin and with fewer

side effects.

There is no federal register for porphyria, and therefore NO PROOF

that it is " rare " . According the NIH's own statistics and other

statistics published in medical journals, if porphyria were equally

dispersed, there are NO LESS THAN 600 PERSONS PER STATE IN THE

UNITED STATES WITH PORPHYRIA (remember there are different types

with higher prevalence). This was an estimate based on the very few

numbers that can be found online for porphyria and using our US

census to obtain population statistics. Yet Dr. says he

cannot complete his Clinical Trial for the Porphozyme because he

does not have enough patients. He has turned hundreds of us away and

said we do not have porphyria AT ALL.

There are many who have low levels of porphyrins and are being

completely ignored and untreated. There is no research that states

that low levels are not just as damaging as higher levels. An

example of a few groups of people with low level porphyrins are:

a. Gulf War Veterans

b. People suffering from Multiple Chemical Sensitivities have

positive porphyrin analysis, but not high enough to be recognized as

porphyria.

c. Vets who were exposed to Agent Orange during Vietnam are

being diagnosed with Porphyria Cutanea Tarda (can be genetic or

aquired through chemical exposure).

d. Vets who have been exposed to Depleted Uranium are being

diagnosed with Porphyria Cutanea Tarda.

e. People who have been " sprayed " or contaminated with

pesticides/herbicides/ and insecticides have been diagnosed with

different types of porphyria, mostly PCT. A large epidemic is most

well known in Turkey where over 5000 people were exposed and became

ill with porphyria, causing them skin problems and other symptoms,

FOREVER.

Please contact me for any further information or ideas on how you

can help.

Thank you so much,

Angelique Welch

angelique7@...

Please help us to spread the word about the disorder Porphyria

By clicking on the links below, you can read about this disorder and

pass this info on to others.

By doing so, you will be helping all porphyria patients by bringing

awareness of a disease that is considered so " rare " that most

medical facilities are not familiar with it and believe they will

never see a case of it, which can be extremely dangerous for

patients.

http://ghr.nlm.nih.gov/condition=porphyria;jsessionid=CD624B6A7BA381F

D92C389ACAD95F879

http://www.merck.com/mrkshared/mmanual/section2/chapter14/14b.jsp