Re: Popping in again to say hello!!!!

[Guest guest]

... you have been one busy gal! Your head must be bulging with so much info.

I did not know you are legally blind. I'm very sorry to read this.

Do you have someone living you to be help?

Keep on keepin' on.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Popping in again to say hello!!!!

Just wanted to pop in to say hello - I feel so badly that I haven't posted anything in months, although I have been keeping track of some of you on Facebook.

It's been a very busy, but very exciting, few months. My SSDI got approved - yahoo! Never thought I'd be so thrilled to make so little money. I'm still fighting with the long term disability insurance carrier on that part - groan. Who would have ever guessed that I'd get SSDI before the insurance I paid for to cover the gap between having to quit working and getting SSDI.

I also never thought I'd be so happy to be legally blind either - it made getting the SSDI easier - only took me seven months. Geesh!

I was at NIH in May for my visit in the Pirfenidone drug trial - everything was okay - my numbers had been down in January and they were the same in May. The good news is they aren't bad. But, after I went into the study my FVC went up 25 points and now it's back to where it was when I went in the study. I can't complain - really - I can't.

After a week at "club Med" I went to Chicago. We did a huge community outreach for Hermansky-Pudlak Syndrome. We spoke at several hospitals and clinics and even churches etc.

Then we went to San Diego for the American Thoracic Society meeting. I was crushed because I wanted to hear the actual presentation on Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a basic science session that was at the same time. One of my friends went, and they were somewhat disappointed with what they heard.

Then we were back in Chicago for Digestive Disease Week. WoW! That meeting is so huge! It makes ATS look like a family picnic - and I thought ATS was huge!

Then we were in Washington for the public meeting of the National Heart Lung and Blood Institute. It was my first time, and it was a very interesting meeting. I was very pleased that they're spending some of their economic stimulus money on PF research. Yippee!

I stayed an extra week with my brother, then came home. I'm so sorry I don't post more - by the time I've updated the HPS Web site, blog, and managed the two HPS listservs (and the one I have for Chediak-Higashi Syndrome, another albinism-related syndrome) - I'm just out of steam.

Now that I'm sort of caught up, I"ll try to do better!

Kirkwood

Director of Outreach, Vice President

Hermansky-Pudlak Syndrome Network

One South Road

Oyster Bay, NY 11771

1 (800) 789-9HPS

www.hermansky-pudlak.org

Personal blog: www.heatherkirkwood.blogspot.com

Search the Web at www.goodsearch.com and choose the HPS Network as your charity!

[Guest guest]

Did you mean do I have someone living with me to help? No, I've lived on my own since I left home at 18 to come to the United States to go to school. I would very much like to move to the Washington DC area to be close to my brother and his wife (and the NIH - evil grin). But, right now I don't think I can afford to live there. Maybe someday it will be possible.

Hermansky-Pudlak Syndrome albinism 02/ PF 06

>> ... you have been one busy gal! Your head must be bulging with so much info.> I did not know you are legally blind. I'm very sorry to read this.> Do you have someone living you to be help?> Keep on keepin' on.> MamaSher; 70, IPF 3-06, OR. > Nasturtiums> Don't fret about tomorrow, God is already there!> > Popping in again to say hello!!!!> > > > > > > Just wanted to pop in to say hello - I feel so badly that I haven't posted anything in months, although I have been keeping track of some of you on Facebook. > > It's been a very busy, but very exciting, few months. My SSDI got approved - yahoo! Never thought I'd be so thrilled to make so little money. I'm still fighting with the long term disability insurance carrier on that part - groan. Who would have ever guessed that I'd get SSDI before the insurance I paid for to cover the gap between having to quit working and getting SSDI. > > I also never thought I'd be so happy to be legally blind either - it made getting the SSDI easier - only took me seven months. Geesh! > > I was at NIH in May for my visit in the Pirfenidone drug trial - everything was okay - my numbers had been down in January and they were the same in May. The good news is they aren't bad. But, after I went into the study my FVC went up 25 points and now it's back to where it was when I went in the study. I can't complain - really - I can't. > > After a week at "club Med" I went to Chicago. We did a huge community outreach for Hermansky-Pudlak Syndrome. We spoke at several hospitals and clinics and even churches etc. > > Then we went to San Diego for the American Thoracic Society meeting. I was crushed because I wanted to hear the actual presentation on Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a basic science session that was at the same time. One of my friends went, and they were somewhat disappointed with what they heard. > > Then we were back in Chicago for Digestive Disease Week. WoW! That meeting is so huge! It makes ATS look like a family picnic - and I thought ATS was huge! > > Then we were in Washington for the public meeting of the National Heart Lung and Blood Institute. It was my first time, and it was a very interesting meeting. I was very pleased that they're spending some of their economic stimulus money on PF research. Yippee! > > I stayed an extra week with my brother, then came home. I'm so sorry I don't post more - by the time I've updated the HPS Web site, blog, and managed the two HPS listservs (and the one I have for Chediak-Higashi Syndrome, another albinism-related syndrome) - I'm just out of steam. > > Now that I'm sort of caught up, I"ll try to do better! > > Kirkwood> Director of Outreach, Vice President> Hermansky-Pudlak Syndrome Network> One South Road> Oyster Bay, NY 11771> 1 (800) 789-9HPS> www.hermansky-pudlak.org> > Personal blog: www.heatherkirkwood.blogspot.com> > Search the Web at www.goodsearch.com and choose the HPS Network as your charity!>

[Guest guest]

I'm trying. My fatigue has been worse than usual this week. My tummy has been acting up too.

Hermansky-Pudlak Syndrome albinism 02 / PF 06

> > > > > Just wanted to pop in to say hello - I feel so badly that I haven't > posted anything in months, although I have been keeping track of some > of you on Facebook.> > It's been a very busy, but very exciting, few months. My SSDI got > approved - yahoo! Never thought I'd be so thrilled to make so little > money. I'm still fighting with the long term disability insurance > carrier on that part - groan. Who would have ever guessed that I'd > get SSDI before the insurance I paid for to cover the gap between > having to quit working and getting SSDI.> > I also never thought I'd be so happy to be legally blind either - it > made getting the SSDI easier - only took me seven months. Geesh!> > I was at NIH in May for my visit in the Pirfenidone drug trial - > everything was okay - my numbers had been down in January and they > were the same in May. The good news is they aren't bad. But, after I > went into the study my FVC went up 25 points and now it's back to > where it was when I went in the study. I can't complain - really - I > can't.> > After a week at "club Med" I went to Chicago. We did a huge community > outreach for Hermansky-Pudlak Syndrome. We spoke at several hospitals > and clinics and even churches etc.> > Then we went to San Diego for the American Thoracic Society meeting. > I was crushed because I wanted to hear the actual presentation on > Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a > basic science session that was at the same time. One of my friends > went, and they were somewhat disappointed with what they heard.> > Then we were back in Chicago for Digestive Disease Week. WoW! That > meeting is so huge! It makes ATS look like a family picnic - and I > thought ATS was huge!> > Then we were in Washington for the public meeting of the National > Heart Lung and Blood Institute. It was my first time, and it was a > very interesting meeting. I was very pleased that they're spending > some of their economic stimulus money on PF research. Yippee!> > I stayed an extra week with my brother, then came home. I'm so sorry > I don't post more - by the time I've updated the HPS Web site, blog, > and managed the two HPS listservs (and the one I have for Chediak- > Higashi Syndrome, another albinism-related syndrome) - I'm just out > of steam.> > Now that I'm sort of caught up, I"ll try to do better!> > Kirkwood> Director of Outreach, Vice President> Hermansky-Pudlak Syndrome Network> One South Road> Oyster Bay, NY 11771> 1 (800) 789-9HPS> www.hermansky-pudlak.org> > Personal blog: www.heatherkirkwood.blogspot.com> > Search the Web at www.goodsearch.com and choose the HPS Network as > your charity!>

[Guest guest]

I build in rest days when I travel so I have a few days to fall apart - grin! It is so much easier, and more pleasant, doing trade shows for people that understand my needs than it was when I was working in the corporate world.

Hermansky-Pudlak Syndrome 02 / PF 06>> ,> I'm so glad to have you pop back in! Been watching your travels via Facebook and sometimes it makes me want to take a nap....don't know how you do it. I get tired just reading about all that you accomplish. > Check in when you can, always happy to see you post!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support > Sent: Thursday, July 2, 2009 10:50:59 PM> Subject: Popping in again to say hello!!!!> > > > > > Just wanted to pop in to say hello - I feel so badly that I haven't posted anything in months, although I have been keeping track of some of you on Facebook. > It's been a very busy, but very exciting, few months. My SSDI got approved - yahoo! Never thought I'd be so thrilled to make so little money. I'm still fighting with the long term disability insurance carrier on that part - groan. Who would have ever guessed that I'd get SSDI before the insurance I paid for to cover the gap between having to quit working and getting SSDI. > I also never thought I'd be so happy to be legally blind either - it made getting the SSDI easier - only took me seven months. Geesh! > I was at NIH in May for my visit in the Pirfenidone drug trial - everything was okay - my numbers had been down in January and they were the same in May. The good news is they aren't bad. But, after I went into the study my FVC went up 25 points and now it's back to where it was when I went in the study. I can't complain - really - I can't. > After a week at "club Med" I went to Chicago. We did a huge community outreach for Hermansky-Pudlak Syndrome. We spoke at several hospitals and clinics and even churches etc. > Then we went to San Diego for the American Thoracic Society meeting. I was crushed because I wanted to hear the actual presentation on Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a basic science session that was at the same time. One of my friends went, and they were somewhat disappointed with what they heard. > Then we were back in Chicago for Digestive Disease Week. WoW! That meeting is so huge! It makes ATS look like a family picnic - and I thought ATS was huge! > Then we were in Washington for the public meeting of the National Heart Lung and Blood Institute. It was my first time, and it was a very interesting meeting. I was very pleased that they're spending some of their economic stimulus money on PF research. Yippee! > I stayed an extra week with my brother, then came home. I'm so sorry I don't post more - by the time I've updated the HPS Web site, blog, and managed the two HPS listservs (and the one I have for Chediak-Higashi Syndrome, another albinism-related syndrome) - I'm just out of steam. > Now that I'm sort of caught up, I"ll try to do better! Kirkwood> Director of Outreach, Vice President> Hermansky-Pudlak Syndrome Network> One South Road> Oyster Bay, NY 11771> 1 (800) 789-9HPS> www.hermansky- pudlak.org> > Personal blog: www.heatherkirkwood .blogspot. com> > Search the Web at www.goodsearch. com and choose the HPS Network as your charity! > > > > > > >

[Guest guest]

I live in the US - in Kansas - both my parents are US citizens. My mom works for the Department of Defense in Germany as a teacher for kids with learning and behavioral disabilities in the school system for US military kids. That's why we were living overseas. We moved to Germany when I was 14 and my mom has lived there every since. When I left for college, I came on my own.

My brother also has Hermansky-Pudlak Syndrome. Legal blindness is part of the syndrome and is present from birth, so to us that isn't so much a big deal. Some of the other health stuff is a bigger deal. , my brother, so far has no PF and very mild digestive problems compared to mine. He's also never had any major bleeding. But, everyone with our type of HPS develops PF - 100 percent of the time. Usually it starts in your 30s. My brother was just married and he and his wife are trying to have a baby, so hopefully the PF will stay away for a while for him. He's 31 years old. That is part of my motivation for some of the advocacy work I do - as has no symptoms now I'm hopeful that the research moves forward and that when he does show signs of PF, there will be more options available.

It's also why HPS is such a great model to study PF. We know who is going to get PF before they do, and we even know about when, so it allows the researchers to study PF in it's earliest stages, before it's really even detectable in most people.

Hope everyone is having a great July 4th! As for me, well, ummm...had a little kitchen "incident." I don't know how I did it, but I burned some sausages I was cooking and now one of my favorite pots has this black in the bottom that won't come off.

Hermansky-Pudlak Syndrome albinism 02 / PF 06

> >> > ... you have been one busy gal! Your head must be bulging with so much info.> > I did not know you are legally blind. I'm very sorry to read this.> > Do you have someone living you to be help?> > Keep on keepin' on.> > MamaSher; 70, IPF 3-06, OR. > > Nasturtiums> > Don't fret about tomorrow, God is already there!> > > > Popping in again to say hello!!!!> > > > > > > > > > > > > > Just wanted to pop in to say hello - I feel so badly that I haven't posted anything in months, although I have been keeping track of some of you on Facebook. > > > > It's been a very busy, but very exciting, few months. My SSDI got approved - yahoo! Never thought I'd be so thrilled to make so little money. I'm still fighting with the long term disability insurance carrier on that part - groan. Who would have ever guessed that I'd get SSDI before the insurance I paid for to cover the gap between having to quit working and getting SSDI. > > > > I also never thought I'd be so happy to be legally blind either - it made getting the SSDI easier - only took me seven months. Geesh! > > > > I was at NIH in May for my visit in the Pirfenidone drug trial - everything was okay - my numbers had been down in January and they were the same in May. The good news is they aren't bad. But, after I went into the study my FVC went up 25 points and now it's back to where it was when I went in the study. I can't complain - really - I can't. > > > > After a week at "club Med" I went to Chicago. We did a huge community outreach for Hermansky-Pudlak Syndrome. We spoke at several hospitals and clinics and even churches etc. > > > > Then we went to San Diego for the American Thoracic Society meeting. I was crushed because I wanted to hear the actual presentation on Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a basic science session that was at the same time. One of my friends went, and they were somewhat disappointed with what they heard. > > > > Then we were back in Chicago for Digestive Disease Week. WoW! That meeting is so huge! It makes ATS look like a family picnic - and I thought ATS was huge! > > > > Then we were in Washington for the public meeting of the National Heart Lung and Blood Institute. It was my first time, and it was a very interesting meeting. I was very pleased that they're spending some of their economic stimulus money on PF research. Yippee! > > > > I stayed an extra week with my brother, then came home. I'm so sorry I don't post more - by the time I've updated the HPS Web site, blog, and managed the two HPS listservs (and the one I have for Chediak-Higashi Syndrome, another albinism-related syndrome) - I'm just out of steam. > > > > Now that I'm sort of caught up, I"ll try to do better! > > > > Kirkwood> > Director of Outreach, Vice President> > Hermansky-Pudlak Syndrome Network> > One South Road> > Oyster Bay, NY 11771> > 1 (800) 789-9HPS> > www.hermansky- pudlak.org> > > > Personal blog: www.heatherkirkwood .blogspot. com> > > > Search the Web at www.goodsearch. com and choose the HPS Network as your charity!> >>

[Guest guest]

leave your pot soaking in water with

a little of the powder/liquid that you

wash your clothes in. someone gave

me this tip last year and its great.

may

> > >

> > > ... you have been one busy gal! Your head must be bulging

> with so much info.

> > > I did not know you are legally blind. I'm very sorry to read this.

> > > Do you have someone living you to be help?

> > > Keep on keepin' on.

> > > MamaSher; 70, IPF 3-06, OR.

> > > Nasturtiums

> > > Don't fret about tomorrow, God is already there!

> > >

> > > Popping in again to say hello!!!!

> > >

> > >

> > >

> > >

> > >

> > >

> > > Just wanted to pop in to say hello - I feel so badly that I haven't

> posted anything in months, although I have been keeping track of some of

> you on Facebook.

> > >

> > > It's been a very busy, but very exciting, few months. My SSDI got

> approved - yahoo! Never thought I'd be so thrilled to make so little

> money. I'm still fighting with the long term disability insurance

> carrier on that part - groan. Who would have ever guessed that I'd get

> SSDI before the insurance I paid for to cover the gap between having to

> quit working and getting SSDI.

> > >

> > > I also never thought I'd be so happy to be legally blind either - it

> made getting the SSDI easier - only took me seven months. Geesh!

> > >

> > > I was at NIH in May for my visit in the Pirfenidone drug trial -

> everything was okay - my numbers had been down in January and they were

> the same in May. The good news is they aren't bad. But, after I went

> into the study my FVC went up 25 points and now it's back to where it

> was when I went in the study. I can't complain - really - I can't.

> > >

> > > After a week at " club Med " I went to Chicago. We did a huge

> community outreach for Hermansky-Pudlak Syndrome. We spoke at several

> hospitals and clinics and even churches etc.

> > >

> > > Then we went to San Diego for the American Thoracic Society meeting.

> I was crushed because I wanted to hear the actual presentation on

> Pirfenidone, but I was a patient speaker for pulmonary fibrosis at a

> basic science session that was at the same time. One of my friends went,

> and they were somewhat disappointed with what they heard.

> > >

> > > Then we were back in Chicago for Digestive Disease Week. WoW! That

> meeting is so huge! It makes ATS look like a family picnic - and I

> thought ATS was huge!

> > >

> > > Then we were in Washington for the public meeting of the National

> Heart Lung and Blood Institute. It was my first time, and it was a very

> interesting meeting. I was very pleased that they're spending some of

> their economic stimulus money on PF research. Yippee!

> > >

> > > I stayed an extra week with my brother, then came home. I'm so sorry

> I don't post more - by the time I've updated the HPS Web site, blog, and

> managed the two HPS listservs (and the one I have for Chediak-Higashi

> Syndrome, another albinism-related syndrome) - I'm just out of steam.

> > >

> > > Now that I'm sort of caught up, I " ll try to do better!

> > >

> > > Kirkwood

> > > Director of Outreach, Vice President

> > > Hermansky-Pudlak Syndrome Network

> > > One South Road

> > > Oyster Bay, NY 11771

> > > 1 (800) 789-9HPS

> > > www.hermansky- pudlak.org

> > >

> > > Personal blog: www.heatherkirkwood .blogspot. com

> > >

> > > Search the Web at www.goodsearch. com and choose the HPS Network as

> your charity!

> > >

> >

>