Too many rare disorders cause patients not to find the help they need.

With hundreds of thousands of rare disorders it is not surprising that so many doctors have never heard of Chiari or syringomyelia. But where does that leave the patients? In many cases, they must become their own advocate, searching the Internet for information. Unfortunately not all information is accurate so you have to try and qualify what you do find.

It was not until the advent of MRI that Chiari and syringomyelia came out of the dark ages. They were both discovered hundreds of year ago but little research occurred and even today what is know is mostly theory. The other issue you may face is having multiple disorders some of which may be related and not. Or the large variety of symptoms that effects people in multiple ways also make one wonder where to look next. These are very complex disorders in some cases at least and unless you are lucky enough to have one of the specialist close enough for regular visit your doctor may become as frustrated as you are.

Unfortunately there are cases that even the specialist has a very difficult time managing. If you have been on any of the many networking sites, you have seen this first-hand. Patients you have surgery after surgery trying to find relief. Where are the answers?

The obviously answer is research. But research takes years and years and millions if not billions of dollars. ASAP is working today and every day to make your life better by bring together doctors who share their knowledge and experience. Developing programs that encourage peer-support. Spreading awareness so that no one has to face the battle alone. We may not have the answers but will keep searching until we do.

Giving Pain A Name

Here are some words to help when trying to describe your pain to you doctor.

Achy – if a part of your body feels achy, you feel a pain there that is continuous but not very strong
Acute- used for describing pain that is very strong and sharp
Agonizing – very painful
angry – an angry wound (cut in your skin) is very red and painful
burning – painful, and feeling as if a part of your body is touching something hot
chronic – chronic pain is serious and lasts for a long time. A serious illness or pain that lasts only for a short time is described as acute
crippling – causing a lot of pain or other health problems
dull – a dull pain is not very strong but continues for a long time
electric shock sensation – feels like electricity running through affected part of body
excruciating – causing extreme physical pain
gnawing – continuously causing you pain or worrying you
griping – a griping pain is a sharp and sudden pain in your stomach
heavy – if a part of your body feels heavy, it is not comfortable and you cannot move it easily
inflamed – a part of your body that is inflamed is swollen, red, and painful because of an infection or injury
irritated – painful, red, or swollen
itchy – if you feel itchy, you have an unpleasant feeling on your skin that makes you want to scratch it (=rub it with your nails)
painful – if part of your body is painful, you feel pain there
painful – making you feel physical pain
raging – very serious, painful, or strong
raw – if your skin is raw, it is very sore
severe – a severe pain, injury, or illness is serious and unpleasant
sharp – a sharp pain is sudden and severe
sore – painful and uncomfortable, usually as a result of an injury, infection, or too much exercise
stabbing – a stabbing pain is a sudden, very strong pain
stiff – if you are stiff, or if a part of your body is stiff, you feel pain in your muscles and cannot move easily
stinging – hitting you hard
tender – if a part of your body is tender, it has been injured and is painful when you touch it
thumping – a thumping headache (=pain in your head) is very severe
tight – if your chest or another part of your body feels tight, it feels as if it is being squeezed
torturous – causing extreme physical pain
unendurable – too unpleasant or painful to bear
vice-like – holding or squeezing you very tightly in a painful way
violent – painful and difficult to control
excruciating – causing extreme physical pain

Family History

I occasionally receive emails for the Genetic Alliance about tips that could be helpful. This one seemed worth passing on.

Do you know your family health history? Check out these cool and easy-to-use tools: the Does It Run In the Family? toolkit and the U.S. Surgeon General’s My Family Health Portrait can help you figure out who and what to ask about your family’s health history, and they provide easy ways of organizing all of the information!

Counting the years

When I came to work for ASAP almost 23 years ago, I never imagined how much this job would affect my life. One thing for sure I never expected I would still be here after all this time. Mostly becasue I thought they would find a cure and there would be no need. But as we all know that is not the case. At that time, MRI was still relatively new and the awareness of the disorders in the medical field was very limited. The thing that bothers me the most is that so many of the people I hear from are still finding that to be the case. They have a hard time finding a doctor who knows enough about the disorders or how to treat the symptoms. I have seen a hugh improvement in awareness but we still have a long way to go.

Hope Renewed

It happens every year.  Attending an ASAP Chiari & Syringomyelia Conference renews the spirit and breathes new hope into what seems like hopeless situations.  This year was no exception.

My daughter just celebrated her sweet sixteenth birthday. All she wanted was to attend the conference- her one chance to see and talk with other kids who face the same challenges she does.  So I packed her up and brought her to Austin, TX.  No small feat since she is home bound at this point.  For the past several months she has spent day after day lying in bed, unable to sit up for more than an hour at a time before the pain gets unbearable.

She wasn’t able to participate in most of the youth activities- her pain levels kept her in the hotel room most of the time. But still she said it was great, and can’t wait to go again.  And mom?  Well, I left with all kinds of great information that is going to help me get my daughter functioning again.  For the first time in months, I feel hopeful and confident that help is out there.  Now I know what to look for and where to go. 

My daughter will be up and functioning again. She will lead a fulfilling and productive life.

Maybe you are feeling as downhearted as I was when I stepped off the plane in Austin. If I can share one thought with you- it’s this: don’t give up.  Stay connected to ASAP and keep reading and searching and asking questions.  Together we can do this! We can improve lives and find the help and hope we need.

Join the Walk for a Cure!

Do you live in the Maryland, Delaware, and Washington, DC area? Are you looking for a way to get involved in the cause?  Then come out and Walk for a Cure on November 6, 2010.  “Trek with the Turmelle Boys” to raise awareness for Chiari and syringomyelia throughout our communities. Please join us if you can on November 6, 2010 at Mariner Point Park, Joppa, MD from 10:00 am until 2:00 pm.

Your participation will help fund vital programs and research for the estimated one million American men, women and children affected by Chiari malformations and syringomyelia.   Participation is as easy as 1, 2, 3!

1.  Go to www.firstgiving.com/cmsm and click Register for an Event.  Choose Walk for a Cure and click register online. 

2.  Create your free fundraising page and start getting sponsors.  Personalize your page with your own pictures and a personal story that tells why you are participating in the event, and what a cure means to you. 

 3. Set a fundraising goal, and send the link to your friends and family and ask them to sponsor you for the walk.  Every walker raising over $30 will receive a t-shirt.

Tips for success:  

Set a high goal. National averages for walk sponsors using a FirstGiving fundraising page range from $150 to $2,000.  Don’t be shy about your goal.  Just think about the tremendous impact you can make.  

You can raise even more money for the cause by creating or joining a team.  Recruit 5-10 people, and set a team goal such as $5,000.  All team members work together to reach the goal by sending out the link to their friends and family.

Post your fundraising page to your facebook page.  Spread the word about what you are doing to help the cause and see what a difference you can make. 

Send out an email when you reach the halfway mark.  Keep your page circulating and remind your friends you are counting on their support.

Invite friends and family to come out and enjoy the festivities.  On site Registration is at 10:00 am and walk begins at 10:30 am.   

Mariner Point Park
100 Kearney Drive
Joppatowne, MD 21085

Still have questions? Email Matt at Matt_Turmelle@ASAP.org

Volunteer Awards

Each year ASAP acknowledges the people who have given their time, energy, and efforts throughout the year to help ASAP fulfill its mission. We were pleased to present our annual Volunteer awards at the 2010 Chiari & Syringomyelia Conference to the following individuals and families that embody the “Together We Can” Spirit!    

Helping Hands Volunteers
Sheryl Andre
Melanie Gaffney
Janice Rucker
LaToya Scott
Glenda Lynch
Seth Grimes
Jaxon Eilers
Tonya Skief
Kimberly Spiroff
Stephanie Spiroff
 
Visionary Awards
Tutrow family
Rosalyn Morgan
Jo Prahl
April Barillari
Nicole Livingston
 
Shining Star Volunteers
Stuart Patterson
Kerry Chu
Ashleigh Schaublin
Sara Eaton
 
Key Volunteer Award
Richard Schaublin
 
Barbara White Award
Arnold Menezes, MD

ASAP Welcomes New Board Members

The ASAP Board of Directors is pleased to announce the addition of  two new Board members.  Dr.  Erol Veznedaroglu is the  Director of  Neurosciences and Endovascular & Cerebrovascular Neurosurgery and  Stroke & Cerebrovascular Center of New Jersey.  He has been a welcome guest speaker at many ASAP support group meetings in the New Jersey area and has been involved with ASAP on many levels over the past year.  We are very excited to have him serve on our Board. 

In addition, Dr. John Oró, Medical Director of  The Neurosurgery Center of Colorado and founder of the Chiari Treatment Center in Aurora, Colorado, has joined the ASAP Board and will serve as the Research Committee Chair.  This position was previously being served by Dr. John Heiss, who will continue to serve on the Board as Medical Advisory Board Chair.

Read more about them.

Co-pays

Co-pays, co-pays, co-pays! As a parent of a child with special health care needs, I know co-pays can wreak havoc on the family budget. If your insurance plan is anything like mine, you may end up paying more in co-pays then you do in maximum out-of-pocket expenses. This can amount to thousands of dollars in “extra” medical bills that don’t count toward the annual cap.

There is help available. UnitedHealthcare has grants available for children’s medical needs that are not covered under commercial insurance plans.  To find out more visit UnitedHealthcare Children’s Foundation 

Adults receiving treatment for chronic pain can apply for grants through the Patient Advocate Foundation Co-Pay Relief

If you know of a foundation offering grants to help cover medical expenses, please post.  Together we can inform each other!