Thalassemia Patients and Friends

Discussion Forums => The Spotlight => Topic started by: deb on December 21, 2009, 07:09:10 AM

Title: Hello all! Greetings from LA to all the ßTM folk here
Post by: deb on December 21, 2009, 07:09:10 AM

So glad to find you. I'm 51, a half-Sicilian woman in LA, CA, with my 13 yo daughter (both with ßTM—I give her everything <3), and our dog Lili, aka Lillers. We enjoy a mostly healthy lifestyle. We apparently come from a long line of Thals. My uncle had ßTMajor and lived til 63! He was a strong believer in diet and good living, designing his own regimens to his doctors' amazement. My mom was a silent carrier; I was dx'd in my mid-teens during the early 70s when little info was available (I was mis-dx'd with Leukemia first!).

Like many here, I was told by dismissive doctors ßTM is asymptomatic; and ignored clear signals this what's the nice word for BS is untrue. Reading some posts here is like reading about myself, bringing me to tears. My main focus is on women over 50 with symptoms,* and teen girls for prevention and education. I don't want my daughter to suffer what I  and others have. Women are more "watery" shall we say, and there are more issues relating to fluids and cell regeneration.

* heart, gyno/perimenopausal, respiratory, exercise tolerance, or any others, as they potentially relate to ßTM. There are so many changes that happen after age 50 anyway, that I want to stay ahead of problems as much as is in my power with ßTM in the mix. Please, illuminate me, esp the ones with these specific conditions:
• Edema (cyclic)
• Asthma/COPD
• Cardiomyopathy
• Pulmonary Hypertension

Thank you, and am grateful for finding this forum—I look forward to sharing anecdotal info and theories!

Most of all, I thank Lisa Cammilleri (RIP) and her loving supporters for the labor of love that is this indispensable site.

cheers  :biggrin

Title: Re: Hello all! Greetings from LA to all the ßTM folk here
Post by: rozmeen on December 21, 2009, 08:10:39 AM

 :welcomewagon
 
 hello dear we too are glad to find u here!!

 i am myself a thal minor too.

 u will soon find replys from senior memebers who are more knowledgeable than me.

 all the best. keep it up :thumbsup
 
 regards,

 rozmeen.

Title: Re: Hello all! Greetings from LA to all the ßTM folk here
Post by: Zaini on December 21, 2009, 09:42:24 AM

Hello Deb,

 :welcome2

Feel free to share everything regarding your experience with thal minor,you'll find here so many posts about thal minor saying we do have symptoms,contrary to what doctors like to think.

Zaini.

Title: Re: Hello all! Greetings from LA to all the ßTM folk here
Post by: deb on December 21, 2009, 05:38:17 PM

Nice to meet you Rozmeen and Zaini... and thank you for the warm welcome. I will certainly study the good info posted on this wonderful forum and contribute as much as I can... I feel better already.
:smiley

Title: Re: Hello all! Greetings from LA to all the ßTM folk here
Post by: Manal on December 21, 2009, 11:01:24 PM

Welcome Deb, i am happy to know that you find the  site helpful, please keep posting :wink


manal

Title: Re: Hello all! Greetings from LA to all the ßTM folk here
Post by: Fadd on December 22, 2009, 05:56:33 PM

hello and welcome to the family, which is growing day by day.

Fouad

Title: Re: Hello all! Greetings from LA to all the ßTM folk here
Post by: Prets on December 24, 2009, 12:00:14 PM

Welcome friend... it is comforting to know that one can now use the term 'symptomatic' in the same sentence as 'thal minor'.

 :hugfriend