Ehlers Danlos - New Psychotherapy Group for Teens and Young Adults

This summer I am beginning A NEW EDS PSYCHOTHERAPY GROUP for TEENS and YOUNG ADULTS

This psychotherapy group offers teenagers diagnosed with Ehlers Danlos Syndrome the opportunity to process the impact of illness on their lives.  It's focus is on providing a supportive therapeutic forum for teenagers to to experience the universality of their experience. Issues include, but are not limited to acceptance, mourning/grief, family relationship, friendships, dating, pain management, life/school balance, adaptation, the cycle of illness.  

The decission to form this group follows the success of the adult therapy group that has been running since the beginning of April.

Office is accessible by public transportation (green line T) - and is handicapped accessible.  
For more information about the group contact me by phone at 617-699-3725 or email at newtontherapist@gmail.com

I am also listed in the Physicians Directory on EDNF website, www.EDNF.org

Top 10 list for a patient with Dysautonomia

Top things any Dysautonomia patient should do:

1. Never give up hope

2. Drink plenty of fluids and exercise when you can.

3. Accept that you have a syndrome but do not let it define you.

4. Always fight and understand that you will win. POTS can only beat you, if you let it.

5. Surround yourself with positive, supportive doctors, friends, etc that will support and go to bat for you. You have the power to choose your team: make it a good one.

6. Do what you can when you can and forgive yourself when you cannot.

7. Learn all you can about your syndrome, so that you can speak intelligibly and credibly to your friends, doctors, co-workers and family members.

8. Do not assume that people around you will understand or will want to understand what you are going through. This includes family members.

9. Listen to your body.

10. Become involved with advocacy. Help spread awareness among family members, doctors, friends, teachers, etc.. Join support groups with people who do understand. Purchase a copy of POTS, Together We Stand( press link below to purchase a copy. 16% of profits will go to spreading awareness and raising money for Dysautonomia research.) and use it as a life-line and resource. Bring it to doctors' visits and to staff meetings with your children's teachers. Join Dysautonomia International and be a part of changing the face of this syndrome forever.http://www.dysautonomiainternational.org/page.php?ID=143

Dysautonomia International - Welcome to Dysautonomia International's Amazon Store

When you shop through our Amazon Store below or our Amazon search box to the right, Amazon donates 6% of the purchase price of anything you buy to...

DYSAUTONOMIAINTERNATIONAL.ORG

Gratitude to Jodi Epstein Rhum for allowing me to repost her most helpful list.

Are you grounded? Try A.N.C.H.O.R.

A.N.C.H.O.R.  (a mnemonic grounding technique reminder)

A.        ACKNOWLEDGE feelings without judgment

N.     NOTICE your surroundings

C.     CLENCH your fists; tighten and release tension

H.     HOLD ON  (hold an object, hold the arms of a chair tightly)

O.     OPEN your lungs; become aware of your breath

R.     RESUME activities; REPEATING and REMEMBERING a grounding practice

Kiran L. Milunsky, LICSW, October 19, 2013

Feelings do not have to be deadly

Feelings do not have to become deadly...   W.A.I.T. !!!

W.     WAIT 24 HOURS.  Promise yourself (and maybe someone close to you) that you can delay any dangerous action. 

A.     ANOTHER SOLUTION.  When you are feeling depressed, upset and hurting it is difficult to think creatively and clearly.  You may not be able to solve all of the complicated problems you feel you are facing immediately.  With time and help to break down the problems, solutions will become more clear.

I.     INVOLVE OTHERS.  Don't isolate yourself at difficult times.  Be in a public place, go to a movie, visit the library, be with friends, family, any trusted adult/clergy member, or supportive school group.

T.     THOUGHTS DO NOT MAKE YOU BAD.  Thoughts and feelings are not actions.  Your thoughts about bad things do not have the power to make you bad.   

SLOW DOWN.  breathe.....LET OTHERS HELP YOU FIGURE THIS OUT.

More help and information is available.  Please do not ever worry alone. 

(W.A.I.T. created by Kiran L. Milunsky, LICSW, October 2013, adapted from ideas by Suzanne Barston, Melinda Smith, M.A. and Jeanne Seagal, Ph.D., Teen Depression: A guide for Teenagers. Helpguide.org.  )

Links:

Riverside Trauma Center Resources

http://www.riversidetraumacenter.org/resources.html

Teen Depression:  A guide for Teenagers   Helpguide.org  

http://www.helpguide.org/mental/depression_teen_teenagers.htm

Disaster Distress Hotline

 1-800-985-5990; txt "Talk with us" to 66746; visit disasterdistress.samhsa.org

Samariteens  1-800-252-TEEN (8336)     3p-9p weekdays; 9a-9p weekends

National Suicide Prevention Lifeline  1-800-273-TALK (8255)