Fright! Fear! Disbelief!
When your doctor hands you a paper with the word lymphangioleiomyomatosis on it and tells you that is what you have, the first reaction is disbelief. As he continues by saying the name and telling you that it is a rare disease affecting women and of the smooth muscle tissue....
He goes on but it is a blur. See, at the time of the broncoscomy a week before he had given me two names of what it possibly was.
I had looked on the internet for more information. What I remembered - 5 to 7 years to live! No known treatment, no cure.
My kids were in high school - I wanted to see them grow up and have families - I was only 50 I had so much more I wanted to do in life! He also gave me the names of two women to go to for support - one at the LAM Foundation and the other at the National Institutes of Health.
I had many, many tearful days.
I remember talking to my older brother - his reaction was "Well, it isn't Cancer." At that moment all I could think of was, "They have treatment for cancer."
There is HOPE - much research is going on. I was diagnosed in 1999. It is now 2008, I have met women who have lived with LAM over 20 years. There is now a treatment trial taking place world wide.
He goes on but it is a blur. See, at the time of the broncoscomy a week before he had given me two names of what it possibly was.
I had looked on the internet for more information. What I remembered - 5 to 7 years to live! No known treatment, no cure.
My kids were in high school - I wanted to see them grow up and have families - I was only 50 I had so much more I wanted to do in life! He also gave me the names of two women to go to for support - one at the LAM Foundation and the other at the National Institutes of Health.
I had many, many tearful days.
I remember talking to my older brother - his reaction was "Well, it isn't Cancer." At that moment all I could think of was, "They have treatment for cancer."
There is HOPE - much research is going on. I was diagnosed in 1999. It is now 2008, I have met women who have lived with LAM over 20 years. There is now a treatment trial taking place world wide.
Check out your symptoms - Are you short of breath?
Shortness of breath, especially following exertion
In the early stages of disease, women with LAM may experience shortness of breath only during strenuous exercise
Symptoms of LAM
A patient may have some or all of these symptoms.
Common signs and symptoms of lymphangioleiomyomatosis (LAM) may include:*Shortness of breath, especially following exertion
In the early stages of disease, women with LAM may experience shortness of breath only during strenuous exercise, but as the disease advances, this may occur even while at rest.
*Chest pain, often caused by a collapsed lung(s)
*Frequent cough, occasionally expelling small amounts of blood
*Fatigue
*Build up of fluid in the lung
*Enlarged lymph nodes
These symptoms are common to other conditions such as asthma, emphysema and chronic bronchitis. Women with LAM are frequently misdiagnosed with one of these conditions. If these symptoms don't improve with treatment or if lung collapse reoccurs, this may suggest that there is damage to healthy lung tissue. With LAM, healthy lung tissue is destroyed by the abnormal growth of an unusual type of muscle cell that invades the tissues of the lungs.
Patients who have any of the above signs or symptoms who don't improve should consult their health care provider, as they may indicate LAM or other serious diseases or complications.
Other Things to Watch For:
*Forty percent of patients with LAM will develop benign kidney tumors called angiomyolipomas, commonly associated with another rare disease, tuberous sclerosis.
*Most women with LAM (six out of every seven) experience a collapsed lung, and recurrent lung collapses are common with LAM.
*In one out of every three patients with LAM, a fluid, called lymph, leaks into the chest cavity and builds up.
LAM is a mystery to many - including doctors.
If you have or know someone who has these syptoms please look for more information
If you have or know someone who has some of these syptoms please look for more information at the following links.
- The LAM Foundation
- This organization has taken the lead in education of medical personel, sponsoring research, and getting recognition for LAM patients.
- National Institutes of Health
- The National Institutes of Health leads research with LAM patients.
- Upcoming Events to raise money and awareness of LAM
- This is a listing of Events all over the US and World that will promote awareness and fundraising for LAM Research.
- History of the LAM Foundation
- This is the direct link to the history and mission of the LAM Foundation.
There are many fun opportunities for you share in Raising Money for LAM
Check out these fun activites or participate in a great sale on line.
October 18th - A Breath of Hope Fall Silent Auction Benefit - Chicago7:00 pm - 11:00 pm
Mars Gallery in the West Loop of downtown Chicago, IL
1139 W. Fulton Market
Chicago, IL 60607-1220
Tickets are on sale now so get them while they are available as space is limited. Ticket price is $80 and includes open bar, hors d'oeuvres and dessert.
Visit The Midwest Friends of The LAM Foundation website: www.friendsoflam.org to buy tickets.
Questions: Please contact either Jennifer Seuring: jrseu71@yahoo.com or Carla Galvanoni: cgalvanoni@yahoo.com
Sally Foster - Online Fundraiser - Deadline November 3, 2008!
If you like to shop AND donate to The LAM Foundation, please visit the Sally Foster website at http://www.sallyfoster.com/.
%u2022 Go shopping
%u2022 When/if you purchase anything, go to "Group/Account Number"
%u2022 Go to "School/Group Account Number and enter #865903*
%u2022 You will see "Eustis Friends of The LAM Foundation"
%u2022 Continue through checkout
Sally Foster offers excellent quality totes, gift wraps, chocolates, home décor and MORE!
50% of your purchase supports The LAM Foundation.
*You MUST enter the number 865903 in order for the Foundation to receive the proceeds.
You will pay shipping on all orders under $70 but shipping is FREE for any order over $70 so get all your friends and family to make one big purchase to help The LAM Foundation!
If you have any questions, please contact Amie Powers at apowers@thelamfoundation.org.
Lord & Taylor Benefit Bash
The LAM Foundation has been chosen by Lord & Taylor Department Stores to shop for a cause! The Benefit Bash is a special day of shopping, events and discounts benefiting local area charities. The LAM Foundation will be represented in FOUR stores:
Manhasset, NY Tuesday, October 21, 2008
Contact: Jodi Waxman at jodikw810@aol.com
Ridgewood, NJ Tuesday, October 28, 2008
Contact: Amy Fabano at 201.391.1191 or afab02@optonline.net
Stamford, CT Thursday, November 13, 2008
We are still looking for a contact person in this area!
Eastchester, NY Tuesday, November 18, 2008
Contact: Gloria Eiseman at 718.548.1847 or gloria.eiseman@gmail.com
For more information about these fundraising (SHOPPING!) opportunities, please contact the representative closest to you OR you can click on the following link:
http://www.lordandtaylor.com/eng/newsEvents/benefitbashinfo.cfm
October 18th - A Breath of Hope Fall Silent Auction Benefit - Chicago
7:00 pm - 11:00 pm
Mars Gallery in the West Loop of downtown Chicago, IL
1139 W. Fulton Market
Chicago, IL 60607-1220
Tickets are on sale now so get them while they are available as space is limited. Ticket price is $80 and includes open bar, hors d'oeuvres and dessert.
Visit The Midwest Friends of The LAM Foundation website: http://www.friendsoflam.org/ to buy tickets.
Questions: Please contact either Jennifer Seuring: jrseu71@yahoo.com or Carla Galvanoni: cgalvanoni@yahoo.com
November 1st - A Day of Discovery Gourmet Tasting Tour - Philadelphia,
3:30pm - 6:30pm
Please arrive by 3pm to allow for check-in and directions
Valanni Restaurant for Tapas & Sangria
XIX (Nineteen) at the top of the Bellevue for an Artisanal Cheese Program
Solefood at the Loews for hors d'oeuvres and raffle
The festivities begin and end at SOLEFOOD
1200 Market St.
Philadelphia, PA 19107
Tickets are $95 per person and space is limited
Questions: Please contact Eden Pontz at eden.pontz@gmail.com
**Please check back soon for more information**
Blog Posts from Google
Information comes from many areas about lymphangioleiomyomatosis these is a Google search.
- Predictors for clinical inquiry participation in the rare lung ...
- Summary: Background: Lymphangioleiomyomatosis (LAM) is a rare, reformist and frequently deadly cystic lung sickness that wellnigh exclusively affects women and has no proven therapies. An improved apperception of the pathogenesis has ...
- Pulmonary Artery Pressure in Lymphangioleiomyomatosis* — CHEST
- Taveira-DaSilva, Angelo M.; Hathaway, Olanda M.; Sachdev, Vandana; Shizukuda, Yukitaka; Birdsall, Charles W.; Moss, Joel.
- Serum Vascular Endothelial Growth Factor-D Levels in Patients With ...
- Background: Lymphangioleiomyomatosis (LAM) is a rare multisystem disorder affecting primarily women of child-bearing age, and characterized by cystic lung destruction, tumors of the kidney (angiomyolipomas [AMLs]), and involvement of ...
- Lymphangioleiomyomatosis Clinical Trial: Doxycycline In ...
- The purpose of the study is to test if the drug doxycycline is effective in slowing the progression of lung disease in LAM. Lymphangioleiomyomatosis (LAM) is a...
""But you don't look sick" --
if they could only see that we can't breath."
So Many Talented Women Help to Raise Funds for Research
- Rachel Nates Designs and Story
- Rachel is a LAM patient and has some great designs to promote organ donation. She is 28 years old and was listed for transplant on June 8 of 2008. Recent update: Rachel lost her battle with LAM July 2008.
Please leave me comments about this lens - or rank it - or favorite it.
If you believe you might know someone with LAM please contact the LAM Foundation.
LAM sisters - feel free to share your story. It might inspire someone to get checked out. Also, share this lens with your friends and family - the more visits, favoring, and rating it the more money it will earn for the LAM Foundation.
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- Richard Richard Mar 3, 2009 @ 12:26 pm
- Hi, I'd like to see if we could help gain additional exposure to your blog. I work with an organization dedicated to working and finding a cure for LAM.
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Reply
- Hansthered Hansthered Aug 28, 2008 @ 2:04 am
- PS. I clicked your ads a few times...hope it helps =D
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Reply
- Hansthered Hansthered Aug 28, 2008 @ 2:03 am
- Keep up the fight...we love you ebay-grandma!
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Reply
- monarch13 monarch13 Aug 23, 2008 @ 6:43 pm
- Thanks for joining The Healthy, Wealthy and Wise Group. 4 stars!
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Reply
- gloria eiseman gloria eiseman Aug 17, 2008 @ 12:58 pm
- I have had LAM for 28 years. I was diagnosed as a result of a collapsed lung. I had shortness of breath, but thought I was just out of shape! I am now on oxygen mostof the time, but am fine, and now celebrating the recent birth of my first grandchild. I feel truly blessed. Gloria in NY
by ebay-grandma
Never thought of myself as an Activist - growing up through the 60s and 70s the Activists took to the 'sit-ins' and 'picket lines'. Now I'm an Activis... (more)
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