3 QUESTIONS/NEED ALL OF YOUR HELP ON THIS
In January, March, or May of this year while at the Rheum office I saw an article on Systemic Lupus and Disability. It included information about how the rules are changing to meet this for SS guidelines and how Lupus is becoming a Autoimmune disease that is more recognized. Anyway I am looking for this article asap. It was in a magazine either for Arthritis, Lupus or Fibro. Can anyone help me with this?
Also another question- does anyone know of any chemo medicine used to help slow the process of Pulmonary Fibrosis? My doctor mentioned 2 different kinds that they may try. He is to call me and let me know if they plan to do this.
Also another question- has anyone experienced unusual gait with Sys Lupus? I am gaiting off to the right hand side and the doctor advised that none of my medicine would be causing that.
Once again any help on these 3 issues appreciated. m&M[/b][/i]
Question # 1:
The Lupus Foundation of America (LFA) recently presented recommendations to the Social Security Administration (SSA) for improving rules used to evaluate immune system disorders in adults and children who apply for disability benefits.The LFA recommended changes to the Listing of Impairments for immune system disorders that would make it easier for seriously ill lupus patients to qualify for disability and supplemental income payments and Medicare.
The SSA is planning to update and revise the immune system listings later this year and held policy conferences in Philadelphia and San Francisco to obtain input from stakeholders. LFA recommended changes to specific wording to make the listings medically accurate, and urged the SSA to increase training for hearing examiners on the unpredictable characteristics of the disease.
The LFA estimates that as many as one in five adults with lupus receives Social Security disability payments.
In its recommendations, the LFA emphasized that lupus is unpredictable and people with the disease may not be sick all of the time.However, some people with lupus are not able to maintain employment because they frequently experience extended absences from work or are hospitalized during disease flares.The LFA also suggested that photosensitivity and short-term cognitive dysfunction be included in the immune system impairments.
The SSA determines that an individual is disabled when he or she is unable to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death, or which has lasted or can be expected to last for a continuous period of not less than 12 months.The SSA uses the Listing of Impairments that describe for each major body system impairments that are considered severe enough to prevent a person from doing any gainful activity.Periodically, the SSA will revise the Listing of Impairments.The agency revised the listing for the musculoskeletal system in 2002.
After receiving input from stakeholders, the SSA will publish proposed changes to the listing for immune system disorders in the Federal Registry.The public will have an opportunity to comment on the proposed changes prior to the SSA issuing final rules, likely in the last quarter of 2004 or early 2005.
The LFA will continue to work with the SSA throughout this process to represent the interests and concerns of the 1.5 million Americans with lupus.Updates will be published on the LFA website.
Here are a few links that might help you in the area of Lupus and Disability:
There is a book that you can purchase entitled: Disability Workbook for Social Security Applicants.
Get the one that was revised in 2005.
Question #2: Pulmonary Fibrosis is also known as Idiopathic Pulmonary Fibrosis, Interstitial Pulmonary Fibrosis, DIP(Desquamative interstitial pneumonitis), UID(Usual interstitial pneumonitis) or just Pulmonary Fibrosis.
Treatment for some types of lung fibrosis can respond to corticosteroids (such as Prednisone) and/or other medications that suppress the body's immune system, these types of drugs are sometimes prescribed in an attempt to decrease the processes that lead to fibrosis. These other immune suppressing medications include gamma-interferon, cyclophosphamide, azathioprine, methotrexate, penicillamine, and cyclosporine. The anti-inflammatory medication colchicine has also been used with limited success. Ongoing trials are underway using newer drugs such as gamma interferon, mycophenolate mofetil (Cellcept), and pirfenidone.
Question #3: You unusual gait may be an indicator if Central Nervous System involvement with your Lupus. The central nervous system (CNS) is clinically involved in approximately 40% of all systemic lupus erythematosis (SLE) patients. It might be a good idea for you to speak to your doctor about this possibility, especially since he feels that none of your medications could be causing this.
I hope that I've answered your questions. Please let me know if you need anything further :P
Peace and Blessings
This is the SS blue book for disabilities. I found this accidently when I was researching disability requirements.
This is an awesome tool to help you understand what they are looking for.
Well, I can't post a link until I am trusted not to spam. So, this is the best I can offer ya. :P