Living With Myelofibrosis And Facing Grave Financial Issues!

Back in 2005 I went to a local clinic with an extremely painful blueish color baby toe.The past month prior to this I lost 45lbs and was not on any kind of diet so I was concerned.After the xrays and bloodtest 2 days later I was told I need to see an oncologist , and I did so a week later, This was when I was told I have a blood disorder.2weeks and a bone marrow biopsy later I was told I have JAK2 Gene mutation/Myelofibrosis.I had cat scans,MRI and was put on hydreah and remained on this med for 5.5yrs constantly having blood work done, had size of spleen and liver checked ect. During this time I was feeling tired, always had some pains throughout my body,night sweats,depressed, and unsure of what to expect next. I worked as well as I could during this period until sept.2009 I could no longer do my job. My employer laid me off so I could collect unemployment and I tried other non physical positions but could not remain focused and could only function about 2-3hrs. In oct.2011 My Oncologist informed me that the HYDREAH was no longer helping my blood cell production and I should consider applying for social security disability,.Another bonemarrow biopsy was taken to see the progression of the disorder and she reffered me to Dr. David Stone@Danafaber in Boston Ma.I was placed in a clinical trial and in March 2012 I was put on a newly USDA approved medication(JAKAFI)This med has helped with my blood counts and reduced the size of my spleen and frequency of the night sweats.I still have bone pain fatigue,dizziness and frequent headaches, but do feel that the JAKAFI is helping. The other drawback is the med cost $2000.00 a month.I feel fortunate that I am still here but wish that the social security admin. would approve my claim for I am unable to be gainfuly employed, I have 4 children 2 of which are 7 & 16 yrs old that I need to provide for. I was denied in jan and am still waiting on my appeal. this adds to the deppression on top of the illness yet you always read,hear and see, addicts,convicted felons and people faking that get approved before someone thats fighting a deadly disease.Sincerely Michael Masello
macem69 macem69
46-50
1 Response Jul 6, 2012

dear michael<br />
your story of being unable to get disability is dreadful -<br />
it is probably ignorance on the part of the powers that be -<br />
you have to experience our disease to relize how weak it makes you -<br />
have you tried those law firms that are always promising success ?<br />
you might try contacting the MPD Foundation<br />
<br />
www.mpdfoundation.org <br />
and ask for their help in getting MF authenticateded as qualifying disease<br />
for disability <br />
<br />
good luck<br />
<br />
cherie