Confessions of a CF Husband - Trisha "close to dying"

[BlondeAsTheyCome]

:clap: :clap: :clap: :clap: :clap: :clap: Well said, Spider Burps, very well said indeed!

-Penny, grandmother to a healthy granddaughter with total albinism

Thank you both. There is a huge difference between having Albinism and CF. My Oculocutaneous Albinism (OCA1) will not kill me. I have to wear sunscreen, glasses, and hats. I get the occasional stare, and have to hold small print close to my face. I also to happen to have 2 other siblings who don't have Albinism. I'm not in a hospital on the verge of death. I respect the parent's decision to not have more kids. That is their decision, however stupid I find it to be.

I would also love to know what partial Albinism is. I've never, ever heard the term before and I've had "full" Albinism my entire life. ;)

[treemom]

I missed this while I was gone for the holidays, but I felt compelled to bump this thread to say W.T.F.? A) Albinism is not a fatal condition, and B) what in the name of all that is good and holy is "a partial albinism"? Do you mean ocular albinism or do you just mean "any sort of albinism other than that one that 'Powder' had"? :roll: And who decides not to have children because they might be doomed!!!!! to a life of *gasp* glasses and *swoon* hypopigmentation? I'm not easily offended, but... ugh... WTF?!

Signed,

one of FJ's pigmentally (shh, that's a word now) challenged

heart you spider burps. heart you

[GeoBQn]

Rick Warren â€@RickWarren

Obama says religious freedom DOESN'T apply to Christians,Jews,Muslims who own their own businesses! http://bit.ly/X14nbm

Shaun King â€@ShaunKing

@RickWarren what the administration is saying is that individuals always have religious freedoms but that businesses are different.

Rick Warren â€@RickWarren

You are incorrect @ShaunKing Call and ask them. I did.

NathanLawrenson â€@NathanLawrenson

@RickWarren preach the truth PR, and don't waste time arguing with those who refuse to accept it.

I doubt that Rick and Warren really care that much about the religious freedom of Jewish business owners, considering Jewish law allows the use of non-barrier forms of birth control.

[Spider Burps]

Thank you both. There is a huge difference between having Albinism and CF. My Oculocutaneous Albinism (OCA1) will not kill me. I have to wear sunscreen, glasses, and hats. I get the occasional stare, and have to hold small print close to my face. I also to happen to have 2 other siblings who don't have Albinism. I'm not in a hospital on the verge of death. I respect the parent's decision to not have more kids. That is their decision, however stupid I find it to be.

I would also love to know what partial Albinism is. I've never, ever heard the term before and I've had "full" Albinism my entire life. ;)

You made me LOL with the bolded text!

I'm assuming for the sake of my sanity that she was referring to leaky gened OCA1B-ers like me with the whole "partial" albinism thing, but... Know what the worst part of having teh dreadedz albinism is? Being forced to wear reading glasses and sunglasses at the same time because we're just so darned hindered by our wonky eyes.

Okay, off to the speshul albinism hospital now! We're having a party... IV fluids and Jell-o for all that survive the sun while getting there!

PS The carrier rate for OCA is 1 in 100. Best to avoid procreating if you're scared of us.

[Emme]

You made me LOL with the bolded text!

I'm assuming for the sake of my sanity that she was referring to leaky gened OCA1B-ers like me with the whole "partial" albinism thing, but... Know what the worst part of having teh dreadedz albinism is? Being forced to wear reading glasses and sunglasses at the same time because we're just so darned hindered by our wonky eyes.

Okay, off to the speshul albinism hospital now! We're having a party... IV fluids and Jell-o for all that survive the sun while getting there!

PS The carrier rate for OCA is 1 in 100. Best to avoid procreating if you're scared of us.

You look kind of adorable with the dual glasses on, I can't lie! Also, you're pretty.

[treemom]

Spider burps...OMG you aren't burping spiders!

Did i tell you I actually toured the Kilimanjaro Christian Medical Centre Albinism Clinic when I was in Tanzania. The work they do there is awesome. They are also building a manufacturing facility for sunscreen to reduce their dependence on expensive imports. It was awesome.

[Spider Burps]

Spider burps...OMG you aren't burping spiders!

Did i tell you I actually toured the Kilimanjaro Christian Medical Centre Albinism Clinic when I was in Tanzania. The work they do there is awesome. They are also building a manufacturing facility for sunscreen to reduce their dependence on expensive imports. It was awesome.

:lol: Yeah, the spiders are trained to stay out of photos. It helps that they're a bit camera shy.

You mentioned the albinism clinic at some point when the discussion turned to sunscreen. It's such a great thing! :) That's when you became my Official Free Jinger Hero for supporting them!

(Also, I totally took another picture a bit after I took this one that made me snort. Forgive my pajama top [i feel like I look topless!], it's just too funny to keep to myself.)

The perils of albinism: three types of glasses! (Though I normally wear contacts because my glasses make me feel like a hipster.)

ETA: Thanks, Emme!

[PennySycamore]

Spider burps...OMG you aren't burping spiders!

Did i tell you I actually toured the Kilimanjaro Christian Medical Centre Albinism Clinic when I was in Tanzania. The work they do there is awesome. They are also building a manufacturing facility for sunscreen to reduce their dependence on expensive imports. It was awesome.

That is wonderful, treemom! I know my granddaughter has to wear sunblock all the time as well as sunglasses when she's outdoors. Fortunately, she seems to have gotten used to wearing sunglasses already. The problem of sun sensitivity has got to more acute that close to the equator.

What is even more important is to decrease the stigma of albinism that people in some parts of Africa experience. People have been killed as their blood and body parts are believed to have magical powers. That has to stop. In China, people with albinism aren't killed, but they are shunned. It almost certainly played a role into why my granddaughter was abandoned at one day old beside a road and why people avoided sitting near my daughter and her husband when they were with their newly adopted daughter.

[treemom]

That is wonderful, treemom! I know my granddaughter has to wear sunblock all the time as well as sunglasses when she's outdoors. Fortunately, she seems to have gotten used to wearing sunglasses already. The problem of sun sensitivity has got to more acute that close to the equator.

What is even more important is to decrease the stigma of albinism that people in some parts of Africa experience. People have been killed as their blood and body parts are believed to have magical powers. That has to stop. In China, people with albinism aren't killed, but they are shunned. It almost certainly played a role into why my granddaughter was abandoned at one day old beside a road and why people avoided sitting near my daughter and her husband when they were with their newly adopted daughter.

The violence towards people with albinism has decreased in Tanzania, but it still happens in areas where poverty and education is low. However, many people with albinism in Tanzania are also shunned. And the risk of skin cancer is much higher the closer you are to the equator because there is more sunlight. or something like that.

[lilwriter85]

I'm still haunted by that episode of 20/20 which featured a segment about albinos in Tanzania. There was a woman who was maimed because of it.

[BlondeAsTheyCome]

For anyone interested in a more thorough examination of the killings/violence against those with Albinism in Tanzania, Under the Same Sun (an NGO out of Canada that works in Tanzania) has a great hour long documentary called White and Black: Crimes of Colour. It brought me, and all of the other people with Albinism in the room, to tears. It was a highlight of sorts of the last conference for people with Albinism in the U.S.

Spider Burps, your pictures are cracking me up!

[lilwriter85]

Nate has tweeted a few times about Tricia having trouble breathing and problems with her feeding tube. I feel bad for Tricia. I think for the next several days Nate might stay away from tweeting stuff related to politics. I think he will tweet about the Redskins and Tricia.

[treemom]

For anyone interested in a more thorough examination of the killings/violence against those with Albinism in Tanzania, Under the Same Sun (an NGO out of Canada that works in Tanzania) has a great hour long documentary called White and Black: Crimes of Colour. It brought me, and all of the other people with Albinism in the room, to tears. It was a highlight of sorts of the last conference for people with Albinism in the U.S.

Spider Burps, your pictures are cracking me up!

under the same sun is the charity we have supported and is building the manufacturing facility we toured.

[treemom]

Nate has tweeted a few times about Tricia having trouble breathing and problems with her feeding tube. I feel bad for Tricia. I think for the next several days Nate might stay away from tweeting stuff related to politics. I think he will tweet about the Redskins and Tricia.

you have more faith in him than I.

[JesusFightClub]

Did they mean vitiligo for "partial albinism"? I've got that, all it requires is more sunscreen and a sense of humour (the patches make any hair on top of them white, which gives an, er, intriguing effect in certain areas).

[B5SnowDog]

Did they mean vitiligo for "partial albinism"? I've got that, all it requires is more sunscreen and a sense of humour (the patches make any hair on top of them white, which gives an, er, intriguing effect in certain areas).

I've got vitiligo too. I'm so pale, it's not really noticeable unless I have a tan.

[Spider Burps]

I've got vitiligo too. I'm so pale, it's not really noticeable unless I have a tan.

Vitiligo wouldn't correlate with the increased risk for "full albinism" mentioned by the poster. OCA1 is due to a specific gene's (tyrosinase [sp?]) malfunction, so carriers of the mutation can have kids with OCA1A like BlondeAsTheyCome, kids with OCA1B like me (hence my assumption that they meant 1B for "partial"), or kids with no albinism at all (like Blonde's siblings and my brother).

Random, but vitiligo is intriguing to me. Is there a simple explanation for why it happens, or should I just Google it? ;)

[lilwriter85]

you have more faith in him than I.

I kind of remember a week or two after the elections, he stopped for a bit with some of the political posts. His anti-choice tweets annoy me the most.

[JesusFightClub]

SB, I don't know what causes it but it runs in my family. My grandma had it then it skipped a generation and I got it.

Me, my grandma and my mum all suffer from autoimmune problems, well my grandma's dead now, but she had vitiligo and my mum and me both have a disorder which affects the blood clotting (a very mild one in her case, slightly more full on in mine) which is also autoimmune. I got both, the vitiligo and the clotting disorder.

Neither of them are serious, I bruise spectacularly and I can't get my much coveted tattoo because if I bleed a bit I don't stop for ages. I have strange white patches, but they're only noticeable in the summer or if you're staring fixedly at certain parts of my body :shock: If I get sunburnt, vitiligo goes in that area (if it's a really bad burn). I don't know why.

[mirele]

Vitiligo wouldn't correlate with the increased risk for "full albinism" mentioned by the poster. OCA1 is due to a specific gene's (tyrosinase [sp?]) malfunction, so carriers of the mutation can have kids with OCA1A like BlondeAsTheyCome, kids with OCA1B like me (hence my assumption that they meant 1B for "partial"), or kids with no albinism at all (like Blonde's siblings and my brother).

Random, but vitiligo is intriguing to me. Is there a simple explanation for why it happens, or should I just Google it? ;)

Sorry, I just caught up with this thread. As far as I understand it ("I'm a computer geek, not a geneticist, Jim!"), it's OCA1B.

[B5SnowDog]

Random, but vitiligo is intriguing to me. Is there a simple explanation for why it happens, or should I just Google it? ;)

It's an autoimmune thing - the immune system kills off the cells that produce melanin. Last time I checked, they don't know what causes it.

I've had other autoimmune issues like Guillain-Barre Syndrome.

[B5SnowDog]

If I get sunburnt, vitiligo goes in that area (if it's a really bad burn). I don't know why.

My wild-ass guess is that the damage from the sunburn does something that triggers an immune response.

[treemom]

looks like he couldn't hold back some political commentary...again

[lilwriter85]

Yup, he couldn't hold back. They are again meeting with a surgeon.

[GeoBQn]

Nathan makes MLK Jr. Day all about abortion.

NathanLawrenson â€@NathanLawrenson

I often imagine, hand in hand with Gwyneth, walking up to the two docs who recommended aborting her and asking them to explain to her why...

Here's a link to his Facebook note, "Why I Cannot Watch the Presidential Inauguration Today"

facebook.com/notes/nathan-lawrenson/why-i-cannot-watch-the-presidential-inauguration-today/10151455153044453

I'm pretty sure that MLK Jr. was at least in favor of birth control.