New member

Report post · October 16, 2001

Hi , Welcome to the group. I am sorry to hear you have suffered with

solar urticaria for so long. My daughter suffers from cold urticaria (and a

host of others) and I think anything involving the weather is so hard to

escape. What meds are you on? Love, ~Alena's Mom

New Member

> Hi everyone,

> I have just finally found you. I have suffered from what the doctors call

> " solar urticaria " for 13 years give or take a few, trying to get a

> diagnosis. I am curious if there is anyone else here with the same thing

> and what they do to cope. I've made many adustments in my life as I'm sure

> you all have, but sometimes it still gets the better of me.

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribeegroups

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

Report post · October 16, 2001

Hi , Welcome to the group. I am sorry to hear you have suffered with

solar urticaria for so long. My daughter suffers from cold urticaria (and a

host of others) and I think anything involving the weather is so hard to

escape. What meds are you on? Love, ~Alena's Mom

New Member

> Hi everyone,

> I have just finally found you. I have suffered from what the doctors call

> " solar urticaria " for 13 years give or take a few, trying to get a

> diagnosis. I am curious if there is anyone else here with the same thing

> and what they do to cope. I've made many adustments in my life as I'm sure

> you all have, but sometimes it still gets the better of me.

>

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> If you do wish to unsubscribe then you can click on the following link:

> urticaria-unsubscribeegroups

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> This list is in the service of those who suffer from Chronic Urticaria

(hives). We strive to support and lift each other as a worldwide

cyber-family.

>

> We share whatever needs to be shared to help one another in our struggle

with Chronic Urticria. Information provided in this forum is not to be taken

as medical advice. Always consult your health professional before trying

anything new.

>

> Any posting that is off the main topic of Chronic Urticaria, we post with

a prefix of NCU -. This is done out of respect for those who do not wish to

read such postings.

>

Report post · October 16, 2001

Hello and welcome,

I have solar urticaria (among others) and I live in sunny California,

having moved here from Texas (dreaming of Alaska), I stay out of the sun,

if I have to go somewhere I take a towel with me in the car and cover any

exposed skin, like if the sun is shining on my arm and if the sun is coming

in the car on the drivers side window (my window) then I lower the window

and put the towel in it and roll it back up to protect myself from it's

rays. (if it comes to a ticket or a hive, I'll take the ticket). I'm

currently looking to buy a parasol, a pretty one....

Cara,

Cara's Poetry Cove

http://www.snowcrest.net/cara

Report post · October 16, 2001

Hello and welcome,

I have solar urticaria (among others) and I live in sunny California,

having moved here from Texas (dreaming of Alaska), I stay out of the sun,

if I have to go somewhere I take a towel with me in the car and cover any

exposed skin, like if the sun is shining on my arm and if the sun is coming

in the car on the drivers side window (my window) then I lower the window

and put the towel in it and roll it back up to protect myself from it's

rays. (if it comes to a ticket or a hive, I'll take the ticket). I'm

currently looking to buy a parasol, a pretty one....

Cara,

Cara's Poetry Cove

http://www.snowcrest.net/cara

Report post · December 9, 2001

Welcome, !

It's nice to have someone else from Dr. Schirmer here and contributing!

In Charlottesville, VA

Roux-en-Y with Gall Bladder Removal: March 31, 1999, 318 lb.

July 26, 2001 -- 194

5'6.5 "

Report post · December 21, 2001

,

I have a 13 year-old daughter,, We also live in MD, Close to

Towson.Her Email is stephanie2@...

New Member

Hello, my name is and I am a new member to this group. My 23

month old son (Reece) just got diagnosed with RSS. He was suspected

to have some form of Dwarfism in-utero but we just found out this

month a specific diagnosis. He was born at 31 weeks weighing 1 pound

6 ounces 12 inches long. He stayed in the NICU for 12 weeks and came

home at 3 pounds 15 ounces. He now weighs approximately 19 pounds

and is about 31 inches tall. Reece is the light of our family and

has a very special personality. He has not had any problems with

feeding but jsut does not gain weight. We need to find an

Endocrinologist in the land/D.C. area. Does anyone know of a

good doc? Is anyone living in the land area? We live in

Lutherville, MD (real close to Towson). I am glad to have found this

group and will be reading as much as possible.

Look forward to talking with you,

Report post · December 21, 2001

,

I am so glad that you have decided to join us here! (I'm the Jodi who

responded to your email to MAGIC.) You are going to find a great group of

people here, although the list may be quiet for a few days because of the

Christmas season. Hang in there, though. You'll have lots of new friends

fast enough!

Again, please let me know if I can help you in any way.

Jodi

>

>Reply-To: RSS-Support

>To: RSS-Support

>Subject: New Member

>Date: Thu, 20 Dec 2001 23:54:00 -0000

>

>Hello, my name is and I am a new member to this group. My 23

>month old son (Reece) just got diagnosed with RSS. He was suspected

>to have some form of Dwarfism in-utero but we just found out this

>month a specific diagnosis. He was born at 31 weeks weighing 1 pound

>6 ounces 12 inches long. He stayed in the NICU for 12 weeks and came

>home at 3 pounds 15 ounces. He now weighs approximately 19 pounds

>and is about 31 inches tall. Reece is the light of our family and

>has a very special personality. He has not had any problems with

>feeding but jsut does not gain weight. We need to find an

>Endocrinologist in the land/D.C. area. Does anyone know of a

>good doc? Is anyone living in the land area? We live in

>Lutherville, MD (real close to Towson). I am glad to have found this

>group and will be reading as much as possible.

>Look forward to talking with you,

>

Report post · December 21, 2001

- Welcome! Your son sounds like such a blessing. And although

from comparing him to peers at home he may seem small, his current

size is pretty " average " for an untreated RSS child. That is good!

Especially considering as you said he doesn't eat. Then again, not

many general population 2-year-olds eat at all anyways!!!! HA!!!

This listserve will be able to provide you with a great deal of

practical and emotional support. In addition, many of us are members

of the MAGIC Foundation, a large non-profit thatserves to support

families with children with growth disorders. There is an RSS

division with over 700 families, 250 or so current members. I am the

current volunteer director. We have a new RSS brochure which has a

great deal of medical information, written in layman terms.

Plus,there is a library of medical articles on all types of subjects

related to RSS, that members can get copies of any or all at no

charge. You can find out more at www.magicfoundation.org, or email me

or JodiZwain privately.

Good luck!!!! Don't hestiate to ask any of us any questions

whatsoever. (,age 5.11yrs, GH, 39lbs, 44 " )

> Hello, my name is and I am a new member to this group. My 23

> month old son (Reece) just got diagnosed with RSS. He was

suspected

> to have some form of Dwarfism in-utero but we just found out this

> month a specific diagnosis. He was born at 31 weeks weighing 1

pound

> 6 ounces 12 inches long. He stayed in the NICU for 12 weeks and

came

> home at 3 pounds 15 ounces. He now weighs approximately 19 pounds

> and is about 31 inches tall. Reece is the light of our family and

> has a very special personality. He has not had any problems with

> feeding but jsut does not gain weight. We need to find an

> Endocrinologist in the land/D.C. area. Does anyone know of a

> good doc? Is anyone living in the land area? We live in

> Lutherville, MD (real close to Towson). I am glad to have found

this

> group and will be reading as much as possible.

> Look forward to talking with you,

>

Report post · December 26, 2001

Dear ,

We live in andria, Virginia and our 22 month old son Jake also

has RSS. Locally our son is followed by our pediatrician who is also

a pediatric endocrinologist. She is in the Kaiser Permanente network

of doctors and her name is Dr. Christie. We also travel up to NY to

see Dr. Harbison () who is considered by many people on

this list to be the leading expert on RSS in the country. I believe

she has over 100 RSS patients. In fact we have an appointment with

Dr. Harbison (Dr. H) this Friday.

Jake has also seen many specialist at Children's Hospital in DC for

various reasons, so please let me know if you need any additional

referrals. (I am posting from another computer, but can normally be

reached at alisonhoward@...)

We don't live too far away, so maybe we can meet sometime.

Best wishes,

Alison (Jake, 22 months, 18 pounds)

> Hello, my name is and I am a new member to this group. My 23

> month old son (Reece) just got diagnosed with RSS. He was

suspected

> to have some form of Dwarfism in-utero but we just found out this

> month a specific diagnosis. He was born at 31 weeks weighing 1

pound

> 6 ounces 12 inches long. He stayed in the NICU for 12 weeks and

came

> home at 3 pounds 15 ounces. He now weighs approximately 19 pounds

> and is about 31 inches tall. Reece is the light of our family and

> has a very special personality. He has not had any problems with

> feeding but jsut does not gain weight. We need to find an

> Endocrinologist in the land/D.C. area. Does anyone know of a

> good doc? Is anyone living in the land area? We live in

> Lutherville, MD (real close to Towson). I am glad to have found

this

> group and will be reading as much as possible.

> Look forward to talking with you,

>

Report post · December 30, 2001

Hi Annette,

Where in California are you? I live in Fremont, about 40 miles south

of San Francisco. There is a doctor at UCSF who is very knowledgable

about RSS named Bruce Blumberg, a geneticist He also works at

Kaiser. We also go to Stanford for my son's endos and other

specialists.

If you have any questions about them, let me know.

(Mom to n, 17 months, 14 lbs.)

Report post · December 30, 2001

Hi Annette,

Where in California are you? I live in Fremont, about 40 miles south

of San Francisco. There is a doctor at UCSF who is very knowledgable

about RSS named Bruce Blumberg, a geneticist He also works at

Kaiser. We also go to Stanford for my son's endos and other

specialists.

If you have any questions about them, let me know.

(Mom to n, 17 months, 14 lbs.)

Report post · March 24, 2002

hello chrissy!

welcome to our site. My name is and I have a 18 mo. old

RSS boy. I am sure you will find this site helpful whether for info. or for

support. Have you checked out the magic website yet? very helpful. the web

address is www. magicfoundation.org. Look into the conference coming up in

july. look forward to hearing more about you and madison.

(mom to (non-RSS), 4, and Christian (RSS), 18 mos., 14

lbs. 27 in.

Report post · March 25, 2002

Chrissy,

I am in NJ, but we have taken Max to CHOP when he was a baby.

Perhaps I have met some of the doctors you are talking about??? Is

there a chance you could travel to NYC to see Dr. H.? It would take

you about two hours at the most to get there and she is an expert on

RSS. The other alternative is to go to the MAGIC Convention and see

her there. It's in Chicago in July.

By the way, I live in MADISON, just outside of town.

Coincidence, huh? And my niece's middle name is Madison. Maybe we

are " destined " to meet...

Jodi

Report post · March 25, 2002

Chrissy,

I am in NJ, but we have taken Max to CHOP when he was a baby.

Perhaps I have met some of the doctors you are talking about??? Is

there a chance you could travel to NYC to see Dr. H.? It would take

you about two hours at the most to get there and she is an expert on

RSS. The other alternative is to go to the MAGIC Convention and see

her there. It's in Chicago in July.

By the way, I live in MADISON, just outside of town.

Coincidence, huh? And my niece's middle name is Madison. Maybe we

are " destined " to meet...

Jodi

Report post · March 28, 2002

Hello ,

Thank you for responding to my message. When did ur son first get diagnosed with

RSS? i was wondering what ur experiences in the last 18 months have been like?

chrisssy

cb3gnr@... wrote: hello chrissy!

welcome to our site. My name is and I have a 18 mo. old

RSS boy. I am sure you will find this site helpful whether for info. or for

support. Have you checked out the magic website yet? very helpful. the web

address is www. magicfoundation.org. Look into the conference coming up in

july. look forward to hearing more about you and madison.

(mom to (non-RSS), 4, and Christian (RSS), 18 mos., 14

lbs. 27 in.

Report post · March 30, 2002

Chrissy,

Sorry it took so long to respond. Have been busy preparing for the

holiday. Christian was diagnosed just recently. (I've only been on this

listserve for approx. 1 1/2 mos.) The last 18 mos. has been a long road

uphill. I know that we are not at the end but at least I have a diagnosis

and an idea of what to expect. That's what made the first 15 mos. so hard.

Going from appt. to appt. and test to test. And the fear of what the outcome

of the tests were going to be. It seems that now that we have our diagnosis

we have been dealing with what seems to be pretty routine toddlerish stuff

(getting into the garbage, etc.).

Were do you live? I am in Chicago (or a suburb thereof). Have you

thought about the conference in July? It will be our first one, but I am

very excited. I can't wait to be around others who understand. Do you have

any other children?

Again I'm sorry it took so long to respond. Hope you have a happy

Easter.

(mom to (non-RSS), 4, and Christian (RSS), 18 mos. and into

everything!

Report post · March 30, 2002