Primary Amyloidosis

[wifeofdyingmarine]

Hello, I am the wife of a dying proud Marine, trying to get his full SC Benefits. His has been diagnosed with the terminal disease, Primary Amyloidosis. He is in the last stages and this insideous disease, which has affected all of his organs. He is on Kidney dialysis and suffers greatly with pain! In layman's terms, his organs, muscles, nerves are being calcified by the amyloid deposits. He was Stationed at Camp Lejeune between 1983-1989. I would like to know if their are others, who were exposed to the toxic water and also diagnosed with this rare disease. Statics show that only 1200 to 3200 new cases are reported in the United States each year. God Bless all of you!

[chitown126]

Dear wifeofdyingmarine, I am so sorry to hear about your husband and his illness. I and bet the fight to get his benefits are even more frustrating and heartbreaking. Who would think that a person who volunteered his life for his country, and now is dying from serving his country, is now being treating in this fashion. I am so disappointed in my government, the marines, and SOB's who attempted this coverup.

With that being said, Hi my name is Terry, and I too have been diagnose with this disease and it was such a shock to find out. I was stationed at Lejeune from 84-87 and I'm almost certain this is where my encounter with this disease started. I have been treated here in Chicago since 12/12 and it was like looking for needle through a haystack before a certain diagnosis was confirmed. I just started my claim with the VA and do realize it's going to be fight because they are already denying any link between the poisonous waters at Lejeune and my diagnosis of amyloidosis. I actually have Bone marrow cancer, amyloidosis, congestive heart failure, anemia, shortness of breath, losing eye vision rapidly, etc. I believe they caught mine's early enough to treat. I'm actually going through my chemo treatment, and if all goes well, I will have a stem cell transplant mid summer. I know it's a lot to deal with, my family is doing the best we can to cope and eventually get through this. I'm a fighter and I'm not giving up.
Feel free to contact me about anything, i actually believe the more cases the VA hears and see will help our cause.

Chitown

[wifeofdyingmarine]

Dear Terry, I am so sorry to hear about your diagnosis of amylodosis. But, be thankful that yours was caught early. My husband was diagnosed with bone cancer, (multiple myeoloma), then amyloidosis. Is that what happened with you? I can already see the long battle ahead of us to get service connection benefits! They keep sending my husband notices that they are working on his case. However, he does have his C & P Examination scheduled for June 29th. I am going to research through my husband's old medical records from the VA when he first got sick and find the diagnosis of multiple myeoloma and present that to the examiner along with other evidence of enviromental toxins that are linked to multiple myeoloma. Presently, he is in the VA Medical Center in Oklahoma City. He has developed complications from amyloidosis. He has been getting hemodialysis everyday to help shrink the pericardial effusion (fluid that has accumulated in the sac surrounding the heart). He is suffering so with pain and anxiety as well as depression. Seek treatment as soon as possible! Mayo Clinic and Boston University are both excellent! Know that you will be inculded in my prayers! God Bless,
Toni.

[chitown126]

Good to hear back from you Toni, and I'm glad to hear you finally have a hearing. Please continue to trust in the Lord and let him guide this process. I'm also praying for your family because this is not easily acceptable. My wife is so angry but I have to keep reminding her God does everything for a reason. Now when I wake up at 2 or 3 in the morning there are no tears and questions, I just have trust he's going to do the right thing. I am being treated at Northwestern University Hospital in Chicago and they have been great so far. Please keep me informed on all your findings with this disease because my fight with the VA has just started. I didn't get sick while serving my first sign came around 11/2011. So the more info I get and the more people come forward I think it will be beneficial for all of us. Communicate to your husband that I'm praying for him and continue the strong fight. I'm also praying for you because I see first hand the toll it takes on the wife.

Terry 773-517-4392 ( just incase you need it)

[PattyLynn]

I just wanted to let you know that I am thinking of you and of your family. We lost my husband to Amyloidosis two years ago. He had never been in Vietnam, so it was not Agent Orange that caused his illness. We were at Camp LeJeune two times. 81-84 and 89-92 approximately. I gave birth to my youngest child there. So far so good on her health. My husband was a tanker and worked with alot of benzene, etc as well as drank the water. We lived at Paradise Point and Doctors Point.

Know that my prayers are with you and your husband and I wish you both the best.

[novadevildog]

I'm a retired Marine who was stationed at Camp Lejeune in 1980 and was diagnosed with amyloidosis in 2005. I was lucky and had a good result from my stem cell transplant in 2006. It is a rare disease (incidence 1 in 100,000), so among the roughly one million Marines and civilians at Lejeune during the long period of toxic water, there would normally be at most 10 cases of this disease. I personally know a retired woman Marine who has it, and this site shows at least 4 other cases (even though it only has a few thousand members). I'm awaiting the results of the health surveys because I think they will show an unusual level of this disease. I've noticed from this site (just joined today) that people are being contacted to substantiate their disease listed in the survey. I haven't been contacted yet, but hope I will be soon.
Jon

[JME]

Jon,
You might consider doing what Mike Partain did with the breast cancer victims, he didn't wait for any scientists to find an association...he went out and found it himself. It took some considerable effort on his part, but the fact that you are dealing with a rare disease (just like male breast cancer (MBC) was for Mike) it could make your effort less cumbersome.

I recommend that you contact all of members you found on our web-site who are afflicted with this ailment and begin a network to find others who were directly exposed and have been diagnosed with Primary Amyloidosis. Mike and his small network of MBC victims went to breast cancer web-sites and solicited for people who had lived or worked at Camp Lejeune during the years of contamination and that list is now up to 83 men. God only knows how many women have been affected, but Mike concentrated on men because he was a MBC victim and MBC is very rare.

Based upon the rarity of your disease and the numbers you have already found in our small membership, I think you might be on to something worth investigating/pursuing...just don't count on government scientists doing it for you...Jerry Ensminger

[novadevildog]

Thank you, Jerry. I think that's an excellent way to pursue it and I'll do so.
S/F,
Jon

[JME]

By the way, I failed to mention that because of Mike Partain's efforts on MBC and the numbers that he and his fellow victims have turned up, ATSDR is pursuing a breast cancer study for Camp Lejeune...Jerry

[ga_peach99]

AMYLOIDOSIS SUPPORT GROUPS
Mayo Clinic, Jacksonville, Florida
Saturday, May 4th
9am -3pm

Speaker: Dr. Taimur Sher, Mayo Clinic

We will meet in Room 153 of the Stabile North Building.

From San Pablo Drive, turn on William Davis Parkway and then make a left on Mellish Drive. Stabile North is a 6-floor building that will be on your left. Parking is located all around the building. Enter the front double doors and turn left at the first hall on your left. Room 153 will be right in front of you at the end of the hall.

Complimentary breakfast and lunch will be served.

Please RSVP to me at pschmitt_98@yahoo.com so I can order the correct amount of food from Panera. I hope to see you there!

We hold Amyloidosis support group meetings in various cities all across the country. Please go to www.amyloidosissupport.com to see a complete list.

[JME]

This is great! Thank you for posting this info....Jerry Ensminger