Monthly Archives: June 2012

Congresswoman Ann Marie Buerkle (R-NY 25th)

On March 28, 2012 in partnership with the National Coalition of Autoimmune Patient Groups (NCAPG), the IPPF co-sponsored a congressional briefing titled, “The Multi-Generational Impact of Autoimmune Disease: America’s Silent Health Crisis” featuring experts on the subject.

The IPPF is pleased to announce that Congresswoman Ann Marie Buerkle (R-NY 25th) is sponsoring a bi-partisan bill that will establish an autoimmune disease interdepartmental coordinating committee — and it has full House leadership support. The bill is excellent and would establish a very high-level committee called the Autoimmune Diseases Interdepartmental Coordinating Committee (ADICC). The Committee would have the responsibility to develop criteria to be used in defining and identifying autoimmune disease, report on the  strategic plan for autoimmune diseases, and make recommendations on education and continued education for health care professionals on autoimmune disease.  Although the funding included is not a lot (just over $1 million), more funding could be added in future years as the ADICC make budgetary recommendations in the follow on years of the bill’s time frame.

I have been told that they will not include any language about a single disease and that the House leadership has also made a decision not to support any single disease (not just autoimmune ones) in any legislative language.  It would, therefore, make real sense to band together behind this bill which will benefit all autoimmune diseases.

The American Autoimmune Related Diseases Association (AARDA) has recommended that the Social Security Administration be included on the ADICC and is waiting to hear back as to whether the Congresswoman agrees. AARDA member organizations would also like to have some language that would support a study of the healthcare costs (now an unknown) of autoimmune diseases and are working together to make this a reality.

The IPPF is a long-time member of AARDA (www.aarda.org) and the NCAPG. This is a great opportunity to work together for the benefit of all autoimmune diseases. The IPPF will keep members posted on the progress of this bill. Feel free to contact your US representatives and let them know you support this bill.

Congress (www.congress.gov)| House of Representatives (www.house.gov)

When taking care of a patient or loved one, a caregiver has to change their schedule to accommodate the tasks of caring. This change may affect the caregiver’s free time and they might have to learn to say “no” more than they would like. Sticking to the routine is important, but so are the needs of the caregiver. For example, going to the movies may interfere with the caring schedule. However, caregiving plans, prioritizing tasks, and external support can help both the patient and the caregiver.

Determining one’s limits by making a list of important tasks can make saying “no” easier. Try asking a friend or family member to help with some of the most frustrating and time consuming tasks. If the friend or family member can’t help, there are public and private organizations that can for little to no cost. Many churches and synagogs have their own volunteer networks that can do minimal work for free.

There may be tasks that can’t be avoided and you have to do them yourself, but it will be more relieving knowing that some of the other tasks were taken care of. If you’re going to ask others for help, make sure that you are direct with your statement. Avoiding the main reason, or trying to make something sound better, will only add to frustration and most likely end up with your friend or family member not understanding the message. Communication is key!

Sometimes as a caregiver, your outside-of-care giving plans do not work out exactly as planned. People have errands, and not everyone has the time to cook a nice meal for the family. As a caregiver, try and think of creative solutions to your problems that fit with your schedule and everyone else’s schedule. Even though it may sound hard, staying creative will keep others interested and you’ll have a solution to your problem. For example, if there’s no one to cook the meal, suggest a potluck dinner, or go to a dessert-only dinner, that way people aren’t worried with having to cook and still have time to do what they wanted to do beforehand.

Caregivers should remember sometimes things don’t work out as planned. And when that happens, do not lose all confidence and let it affect your emotional and/or physical health.The best option is to let it go and move on. This will offer a better outcome for the caregiver and the patient.

It’s easier to say no with the help of a support group. The people in the group have been in similar situations and are willing to help you become an assertive and confident caregiver. With help, you will be able to get time to relax and wind down. Plan your social-time around your schedule and around the schedule of who is helping you. In your free time, go read a book, take a walk, etc. Doing this may leave you happy and help relieve stress. This way, when you return to the patient, you’ll be happy and refreshed.

Being a caretaker is a hard and stressful job. But with the help and support of others, you will be able to fine-tune your schedule to something that allows you to ensure the care of the patient AND go out and enjoy yourself.

 

People with chronic health conditions like Pemphigus and Pemphigoid are more likely to have vitamin and mineral deficiencies. This deficiency can be from the disease itself, the regimen of medications that you are on or even from the change in your lifestyle after being diagnosed.

Our bodies absorb vitamins and minerals from the foods that we eat and often our diets change dramatically after being diagnosed with Pemphigus and Pemphigoid. If we have oral involvement, we have a tendency to choose foods that are easy to digest and swallow.

The following is a discussion regarding some of the most important vitamin and mineral supplementation needed for Pemphigus and Pemphigoid patients. Vitamin and mineral supplementation is very important to keep your body operating properly.

Vitamin D: One of the most important vitamins needed for Pemphigus and Pemphigoid patients as the combination of lack of sun, the use of Prednisone and even the disease itself can deplete the body’s absorption of this vitamin.

Calcium: If you are taking Prednisone you should ask your physician about a Calcium supplement as Osteopenia and Osteoporosis are common.

Iron: Fatigue is a direct result of Pemphigus and Pemphigoid and can also often be caused by lack of Iron in our diets. Some medications (Dapsone) that are used for the treatment of your condition can also cause Anemia or lack of Iron in your blood.

Here is a list of other vitamins and their uses that may be helpful and you should ask your physician about:
Vitamin A (Retinol): The body uses vitamin A to form and maintain teeth, mucous membranes, skin and hard and soft muscle tissue.

Vitamin B3 (Niacin or Niacinimide): Vitamin B3 reduces low-density lipoproteins or bad cholesterol and fibrinogen, which may contribute to inflammation.

Vitamin B7 (Biotin): Supports healthy hair and skin by helping process proteins.

Vitamin B9 (Folate or Folic Acid): Helps with Anemia, especially in patients using Methotrexate.

Vitamin B12 (Cobalamin): Helps maintain healthy nerve cells and red blood cells.

Vitamin C (Ascorbic Acid): The body uses vitamin C for iron absorption and collagen, bone, cartilage, muscle and blood vessel formation.

Vitamin E (Tocopherol): substances that damage cells by steeling electrons and destroying cellular DNA. Exposure to environmental toxins such as sunlight and tobacco smoke may trigger free-radical formation in the body. The body also uses vitamin E to form red blood cells and absorb vitamin K.

Vitamin K (Phytonadione): Your body stores vitamin K in fatty body tissues. Clinicians may use vitamin K to control the effects of anti-coagulant medication. This vitamin also supports healthy bone structure.

Zinc: Zinc regulates protein synthesis, growth development, and wound healing.

Magnesium: Involved in cellular energy production, bone structure, and nerve and muscle function.

These are just some of the vitamin and mineral supplements that can assist you with managing your condition. Remember that it takes a multi-faceted approach to improving your condition and that supplements may only be part of the solution. Please check with your physician regarding these vitamins and minerals and the amounts that they recommend before using them.

When you need us, we are in your corner!

Marc Yale – Peer Health Coach

Anti-p200 pemphigoid is a rare subepidermal blistering disease associated with autoantibodies against a 200kDa protein, reportedly corresponding to laminin γ1. However, direct evidence of the pathogenic potential of these antibodies is missing. We have followed up a patient with anti-p200 pemphigoid for five years. During this period she experienced a total of three generalised relapses. Quantifying our patient’s autoantibody concentrations against laminin γ1 by ELISA throughout the course of her disease we demonstrated a clear correlation with disease activity, thus providing first evidence of the possible pathogenic role of antibodies against laminin γ1 in anti-p200 pemphigoid. Further analysis by Western blotting revealed the occurrence of additional autoantibodies against α3 chain of laminin 332 1½ years after diagnosis, suggestive of intermolecular epitope spreading. Yet, the clinical appearance was unchanged and mucous membranes remained unaffected at any stage of the disease.

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2133.2012.11076.x/abstract;jsessionid=2CC44AEBB9086AAB7009C30B7627506C.d02t01

 

Rituximab has been reported to be effective in various small case series of patients with severe and/or refractory pemphigus. However, no systematic evaluation is available to corroborate this observation. The aim of this study was to systematically determine efficacy and safety of rituximab in treatment-resistant pemphigus.

Patients and Methods: Multicenter retrospective, observational study of 36 patients with severe pemphigus vulgaris (n = 33) and pemphigus foliaceus (n = 3) treated with rituximab before August 31st, 2008 and enrolled in a national observational registery between December 2008 and June 2009.

Results: Within a mean period of observation of 11 (1–37) months, 21 (58 %) pemphigus patients showed complete, 13 (36 %) partial, and 2 (6 %) no response to rituximab treatment. This correlates with a mean improvement of the visual analog scale for well-being of 34 (20–60) at baseline to 75 (40–95) at the last control visit. In 4 (11 %) patients, severe adverse events were recorded including 1 (3 %) serious infection.

Conclusions: Data collected in this systematic registry indicate that rituximab is an effective and relatively safe adjuvant treatment option for refractory pemphigus. To further extend our knowledge on efficacy and safety of this drug, controlled prospective trials are required.

Click here for the full article

from MedWorm Query: Pemphigoid

Immunoadsorption (IA) has been successfully used in a large variety of autoantibody-mediated disorders. In dermatology, IA is increasingly applied as adjuvant treatment for severe and/or refractory autoimmune bullous diseases. These disorders are characterized by autoantibodies against structural proteins of the skin and/or mucous membranes and include, among others, pemphigus vulgaris, pemphigus foliaceus, and bullous pemphigoid. Autoimmune blistering diseases are associated with a high mortality (pemphigus) or morbidity (bullous pemphigoid) and in particular in pemphigus diseases, treatment is challenging. The pathogenetic role of autoantibodies in most of the immunobullous diseases has been clearly demonstrated, therefore, removal of these autoantibodies is a rational therapeutic approach. IA has been shown to effectively lower the serum autoantibodies and to lead to rapid clinical responses. Most recently, IA has been successfully applied in patients with severe atopic dermatitis and high total serum IgE levels. Here, the different treatment protocols, clinical efficacy, and adverse events are summarized.

MedWorm Message: Please have a look at this new site driven by MedWorm: The Breast Cancer Daily

http://www.medworm.com/index.php?rid=6057876&cid=u_0_19_f&fid=29471&url=http%3A%2F%2Fonlinelibrary.wiley.com%2Fresolve%2Fdoi%3FDOI%3D10.1111%252Fj.1744-9987.2012.01075.x