wegener'sgranulomatosis

Weggie’s Unite Awareness

patricebrown — Tue, 04 Jan 2011 07:28:27 +0000

A wonderful selection of tees and hoodies made by Weggies Unite to raise awareness. Available at www.zazzle.com/weggiesunite

First Time In Western US: Vasculitis Symposium

patricebrown — Tue, 25 May 2010 06:02:02 +0000

The All Star Vasculitis Symposium will be held July 30 – August 1, 2010

at the beautiful Westin Long Beach Hotel in Long Beach, California.

This is the first time the Symposium will be held in the western USA.

The biennial conference is the largest meeting of vasculitis patients, family members and medical vasculitis experts in the world. Topics will cover all the vasculitides and will concentrate on the advances in medical treatments, research and quality of life issues for our patients. Newly diagnosed patients will find hope and receive encouragement that they will get better, experienced patients will find the most up-to-date information on treatments and staying in remission.

For more info on symposium including schedule click here

For reservations at Long Beach Westin click here

To register click here

Toll Free: 800.277.9474
Phone/Fax: 816.436.8211

15 Reasons Why To Walk in 2010

patricebrown — Tue, 25 May 2010 05:27:20 +0000

Vasculitis Foundation Canada is proud to bring this incredible event to you for the first time.

There are “15 Reasons Why To Walk” on Saturday, June 26th 2010. Help us strengthen awareness and raise funds so we can increase research and education of patients, family members, friends and the medical community.

The 15 Reasons:

Behcet’s Disease
Buerger’s Disease
Central Nervous System
Churg Strauss Syndrome
Cryoglobulinemia
Giant Cell Arteritis
Henoch-Schonlein Purpura
Hypersensitivity Vasculitis
Kawasaki Disease
Microscopic Polyangiitis
Polyarteritis Nodosa
Polymyalgia Rheumatica
Rheumatoid Vasculitis
Takayasu’s Arteritis
Wegener’s Granulomatosis

Can’t join us on that day…no problem! You can still have all the fun setting up your own donation page and inspiring others to help you out. We will even provide you with your own volunteer walker. So no matter if your near or far you can still participate.

Thank you for your time and support!
Sincerely,
Vasculitis Foundation Canada

To register or donate click here

DNA Study for Wegener’s Patients

patricebrown — Tue, 18 May 2010 05:31:37 +0000

The goal of Dr. Katherine Siminovitch’s study ‘Identification of Novel Wegener’s Granulomatosis Susceptibility Genes’ is to identify the genes that confer risk for Wegener’s. Results of this study have already confirmed the association of WG patients are required to provide the sensitivity required to identify such genes.

It is easy to participate in this study. Patients who enroll in the study will be asked to complete a few forms relating to their clinical symptoms and will be sent materials allowing for blood samples to be drawn at their doctor’s office or laboratory and shipped to Dr. Siminovitch.

Identification of WG susceptibility genes provides a promising avenue towards development of improved diagnostic and prognostic tests, as well as new targets for their therapeutic management.

All WG patients are eligible for the study, regardless of geographic location, age or gender.

To learn more about this study please contact Research Coordinator: Jennifer Campbell, Phone 1-416-946-4501 x 3297 Mount Sinai Hospital, Toronto, ON, Canada or contact us at research@vasculitis.ca

Latest Clinical Research

patricebrown — Sun, 16 May 2010 20:17:59 +0000

Dr. Katherine Siminovitch of Mount Sinai Hospital in Toronto, Ontario Canada is undergoing research for WG. The purpose of this study: ‘Identification of Novel Wegener’s Granulomatosis Susceptibility Genes’ is to identify the genes that confer risk for disease. The study has already identified variants in three of the genes studied and determined them to be significantly associated with WG. While we are continuing to assess other gene variants for their relevance to WG, the study needs at least 250 more WG patients to donate samples to have sufficient data to develop results. It is very simple to participate in the study. Patients enroll in the study and have a blood sample drawn at their doctor’s office or laboratory and shipped to Dr. Siminovitch with the materials provided. If it is not convenient for you to have your blood drawn, we can send you a saliva kit – the saliva sample can be done in your own home. Identification of WG susceptibility genes will provide a promising avenue to the development of improved diagnostic and prognostic tests, as well as new targets for therapeutic management.

All WG patients are eligible for the study, regardless of geographic location, age, and gender.

For more information email Jennifer or Stephanie at clinicalgenet.research@gmail.com. They are the research coodinators of the project. Or call at 416-946-4501 x3297.

The 2008 Vasculitis Symposium

patricebrown — Fri, 05 Mar 2010 05:43:08 +0000

The Symposium is held every other year and is one of the most important services the VF provides its members and friends.

Knowledge: Topics will cover all the vasculitides and concentrate on the advances in medical treatments, research, quality of life issues, complementary medicine and nutrition. The meeting includes plenary sessions for the entire group and smaller Q&A breakout sessions on specific topics. The speakers include many of the world’s top medical experts in vasculitis.

Community: One of the greatest benefits of attending the Symposium is the wonderful opportuntity to meet other patients who are living successfully with their illness and caregivers and family members. Please come and share your experiences and knowledge.

Hope: Newly diagnosed patients will find HOPE and receive encouragement that they will get better; experienced patients will find the most up to date information on treatments and staying in remission.

The Exhibit Area will include information on all the diseases and posters detailing the most recent research advances which are improving the lives of all vasculitis patients.

For more information about the Vasculitis Symposium click here

The Godspeed Caregiver

patricebrown — Fri, 06 Nov 2009 23:09:31 +0000

Your role as caregiver ended more than two years ago. You find yourself compelled to make a difference in the lives of other caregivers. You share information readily with caregivers in the earlier stages, or you start a business dedicated to helping family caregivers, or you find a job in which you assist family caregivers. And, you treasure each relationship you have in your life, recognizing that each day, and your health, should never be taken for granted.

Your Purpose: To implement your lessons learned from your role as caregiver, from your care recipient and from your family members and friends. During this stage, which can last as long you wish–even your lifetime–you reap the benefits of your efforts.

Steps you can do in this final stage:

1. Follow your dreams. Make your goals your achievements.

2. Family caregivers will look to you as a mentor and leader. Allow caregivers in earlier stages the same freedom to stumble and steady themselves that you had. All worthwhile journeys have trips and wrong turns; the journeys become meaningful as we learn from our mis-steps.

Share your experiences with expectant caregivers, freshman caregivers, entrenched caregivers and pragmatic caregivers. They can learn from you! Many of the books, web sites, audio tapes and videos which helped you along your journey were developed by Godspeed Caregivers.

3. Treasure the memories you have of your care recipient. Continue to remember your care recipient regularly through rituals, such as enjoying an ice cream cone in her honor on her birthday, or by planting trees in her name. Reading and reviewing your diary will be a great way to remember.

Of course, your best memorial to your care recipient’s memory is a life you build for yourself filled with healthy relationships, productive careers and joy and laughter.

The Transitioning Caregiver

patricebrown — Fri, 06 Nov 2009 23:04:21 +0000

You’ve been a caregiver over a period of several years and have recently made a decision about your role as caregiver. Or, your care recipient’s condition has taken a turn for the worse and you know his time is very limited.

Your Purpose: To walk with your care recipient during his last months and weeks, implementing his or her decisions about end-of-life care that you both discussed during Stage 1. This stage is about loving and feeling good about the shared journey. As you both feel the journey end, this is also a time to mourn and grieve. As you mourn, you might find yourself questioning what will be the next chapter in your life. You’ve been a caregiver for so long, how can you possibly do anything else?

Some steps you can take during stage 5:

1. Allow yourself time to mourn and grief.

A nursing home placement may have been as painful a loss as a death. Both experiences are tremendous losses–and need to be respected with time to process, and then heal, the emotions. Or if the choice has been made for assistance at home, life will still require process.

2. Remember your care recipient.

You don’t have to give away clothes or remove pictures–until you want to. When family and friends seem hesitant to talk about your care recipient (they worry they will upset you), assure them that sharing memories, laughs and stories brings you great comfort.

3. Reflect back on your caregiving responsibilities and decisions with pride.

Find comfort in knowing that you did the best you could. You did your best, which is the very best you can hope to do.

4. Review your journal.

How are you different today than you were on the day you first started writing in your journal? How will you use this experience to enhance your future relationships?

The Pragmatic Caregiver

patricebrown — Fri, 06 Nov 2009 23:00:10 +0000

You’ve been caregiver for an extended period of time. You’ve been through it all: hospital admission and discharges; short-term rehab stays in nursing homes; a vast array of community services. You may appear to doubt the advice given by health care professionals; you’ve just been through the health care system long enough to know that sometimes health care professionals may not seem to have your best interest in mind.

Some family members and health care professionals worry about your ability to find humor in situations they find offensive. They view your attitude as “calloused” and “uncaring”. Far from it, you have a very practical, very realistic approach toward your caregiving role–and your sense of humor has been a critical tool for your survival. Without your sense of humor, you would have given up a long time ago.

Your Purpose:
To gain a better understanding of yourself and your care recipient. You’ve settled into your role and your routine; now is your opportunity to step back and reflect. The first three stages laid the groundwork for this stage, your period of personal growth.

Some steps you can take during stage 4:

1. Work on finding joy in your relationship with your care recipient.

The biggest joy-killers may be your hands-on duties: bathing, dressing, incontinence care. But these duties bring you together, this is your time together. Add some fun to your hands-on care: Sing songs, tell jokes, share goals and dreams.

2. Work on forgiving your care recipient for past hurts.

Resentment toward past wrong and injustices will make your present caregiving role very difficult. Let go of what was and concentrate on making what is healthy and productive.

3. Develop a habit of enjoying shared activities.

Develop a routine of time shared as husband-wife, mother-daughter, father-son rather than as just caregiver and care recipient. Releasing the roles of caregiver and care recipient allows you to enjoy each other.

4. Begin to think about your future.

What goals have you yet to achieve? How can you achieve them? Can your care recipient help you achieve them?

The Entrenched Caregiver

patricebrown — Fri, 06 Nov 2009 22:53:53 +0000

You’ve been involved in your care recipient’s care for a few years. Your involvement is almost daily–if not constant. Your care recipient may live with you–or your involvement means that your day is structured to be available to your care recipient. You begin to wonder, how much longer can you live this way? Your mood is sometimes upbeat–you’re proud you’ve been able to provide such wonderful care and make decisions that support your care recipient’s best wishes–and sometimes melancholy–why you? You’ve been mourning the loss of your care recipient’s abilities and functions and often long for the days before caregiving. And, you’re tired.

Your Purpose:
To develop a routine, create a familiar schedule for both yourself and your care recipient. A routine will help you deal with the overwhelming stresses and responsibilities that wear you out. A routine will provide comfort for you and your care recipient–this stage may be the most difficult for both of you. The changes you prepared for in Stage 1 and 2 are now a reality–you have become something of a lifeline to a family member or friend.

Some steps you can take during stage 3:

1. Determine your limits.

How long can your care recipient remain at home? What’s your comfort level in providing care in your home? For instance, some caregivers feel uncomfortable providing care when their care recipients become incontinent. Others determine they can provide care at home as long as Medicare or insurance benefits offset some of the home care expenses. Others feel that they can provide care as long as their other family members, like spouses and adult children, will put up with it.

But, everyone has limits. What are yours?

2. Continue regular breaks.

Consider annual weekly breaks–investigate short-term respite stays in your community’s nursing homes. Or, ask relatives to take over the caregiving role for a week or two every year or every two years. Continue to take daily, weekly and monthly breaks. Keep up with your own interests and hobbies as best you can.

3. Keep up with a support system–a caregiver’s support group or empathetic and understanding family members or friends.

And, if you find yourself struggling to stay sane, consider finding help through a counselor or therapist. In addition, check with your doctor about a screening for depression; if you are depressed, ask about treatment and medication options.

4. Continue to learn about your care recipient’s illness or condition.

Sometimes its good to go back and review/remind yourself what you and your loved one is faced with.