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Psoriasis Club › HealthHealth Boards › Introductions v
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Hello from Maryam

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Hello from Maryam
Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
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Location: France
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Treatment: Bimzelx / Coconut Oil
#11
Thu-08-06-2017, 22:51 PM
(Thu-08-06-2017, 22:46 PM)Maryam Wrote: tnx to all who welcomed me :-)

and Fred...I am not blaming nor having a negative attitude towards my mother, it is just a stated fact and part of my story. My 2 aunts as well both my grandparents from my mothers side have psoriasis. And I know N=1 does not equal proof, but the role of genetics is becoming more clear and clear in the last years.

To me the inheritance is a neutral fact. I'm sorry you read it like I meant it with an attitude.

Oops please don't apologise. I should probably be the one to apologise, I tend to open my mouth and say what I think at the time of writing.

Smile
Caroline Offline
You must hurry if you ever want to catch a chicken...
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Treatment: Got back to DMF slow release
#12
Fri-09-06-2017, 05:25 AM
Me also, I am thinking that genetics plays a role. But not without a trigger. So the genetics may make you more vulnerable, but there is a certain point in your life where something overflows and then it ignites. At least that makes sense to me, don't you think so?

Maryam, is this the first systemic you are using ? Didn't they (the derm or whoever is prescribing it) first try to get you on something else?

Btw I think Fred interpreted your words a little on the negative side, it is a Nivea thing that sometimes happens, normally he behaves very well, I will kick him when I see him in the coffee-corner Big Grin . My dad also has Psoriasis but of course you never would blame them for that as they just cannot help it, just like yourself can't help that you have it.

Cheers,
Caroline
Maryam Offline Author
100 + Member I Just Cant Stop !

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#13
Fri-09-06-2017, 06:08 AM
Carolne, yes, you definitely need a trigger.

It is estimated dat about 10% of the world's population is born with "the right set of genes" to develop psoriasis, but only 2 to 3% actually get it.

And my dermatologist suggested it to me :-). I told her I was tired of all the ointments and the last time I had a flare I spend months on light treatment without any effect. I am a mother, working and a student so I don't havet the time to go to the dermatologist 3x a week. The dermatologist fully understood. The last time I had flare it only went away because I was pregnant. She gave me information and told me to think about it :-).
Caroline Offline
You must hurry if you ever want to catch a chicken...
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#14
Fri-09-06-2017, 07:12 AM
(Fri-09-06-2017, 06:08 AM)Maryam Wrote: Carolne, yes, you definitely need a trigger.

It is estimated dat about 10% of the world's population is born with "the right set of genes" to develop psoriasis, but only 2 to 3% actually get it.

And my dermatologist suggested it to me :-). I told her I was tired of all the ointments and the last time I had a flare I spend months on light treatment without any effect. I am a mother, working and a student so I don't havet the time to go to the dermatologist 3x a week. The dermatologist fully understood. The last time I had flare it only went away because I was pregnant. She gave me information and told me to think about it :-).


Well, that seems to me as a very good dermatologist !!
You don't have many that work that way, but it seems to be changing. Where the rheumatologists only know one word "Methotrexate", Dermatologists seem to have a wider view on Psoriasis and the possible treatments.
Do you also have Psoriatic Arthritis?  Or are you 'lucky' not to have that?

Are you really Dutch?

Smile
Caroline
Maryam Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
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#15
Fri-09-06-2017, 10:22 AM
Ik ben 100% Nederlands ;-) ik woon in de buurt van Utrecht.

And no, as far as I know I don't have psoriatic arthritis.

And yes, I think I have a good dermatologist. I go to a dermatological centre. They would even print me articles from pub med when I asked for it :-). They're really there to help.
Caroline Offline
You must hurry if you ever want to catch a chicken...
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#16
Fri-09-06-2017, 10:28 AM
(Fri-09-06-2017, 10:22 AM)Maryam Wrote: Ik ben 100% Nederlands ;-) ik woon in de buurt van Utrecht.

And no, as far as I know I don't have psoriatic arthritis.

And yes, I think I have a good dermatologist. I go to a dermatological centre. They would even print me articles from pub med when I asked for it :-). They're really there to help.

Okee.. Leuk !! Eindelijk nóg een Nederlandse op het forum. Ik kom uit de Bollenstreek.

Great that you don't have PsA. Keep it that way Smile

That is sounding very good !
I have been (am still) involved with the Psorinovo guys, even know the developer of it personally.  I know it has been quite a fight for them, for years, to get Psorinovo (or even DMF) on the front door of dermatologists. While it is one of the best treatments available to start with. And if it works it has a very long working time. Do you know them ? It is a separate patients community (only in the Netherlands) that is working on Scientific Research and currently undergoing a merger with the two other patients communities in the Netherlands.
Naming or referring on this forum to them is not allowed, due to the regulations Rules , but you can talk about additional sources of information. And.... anyway, this is the best forum available on the Internet. Rolleyes
jiml Offline
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#17
Fri-09-06-2017, 10:36 AM
Goede morgen en bedankt voor terugkomen ( that's as much as I can do in Dutch hope it's not rude )

Good to see you back and I'm sure Caroline will be able to answer any questions you may have regarding Psorinovo
Maryam Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
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Location: The Netherlands
Psoriasis Score: 0!!!
Treatment: Stelara
#18
Fri-09-06-2017, 13:45 PM
Tnx Jimi, it's very good ;-)

Caroline, I know the site, but the forum seems to be very inactive at the moment...
Caroline Offline
You must hurry if you ever want to catch a chicken...
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Posts: 26,597
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Psoriasis Score: 3
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Treatment: Got back to DMF slow release
#19
Fri-09-06-2017, 13:54 PM
(Fri-09-06-2017, 13:45 PM)Maryam Wrote: Tnx Jimi, it's very good ;-)

Caroline, I know the site, but the forum seems to be very inactive at the moment...

Yes, that is correct. There is not much activity over there. That's why it is over here, way better. Wink

Oh... it is jiml, with an "L"on the end.. Smile But we call him Jim, or barman, or well whatever we can think of. Tongue
KyPrincess Offline
I'm a little flakey

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#20
Fri-09-06-2017, 15:27 PM
Hi Maryam, Welcome to the club.
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