Finding emotional support

Are you getting the support you need? If so, how did you find it and what would you recommend to others?

Discussions

PML

• By markyuk · Posted May 15, 2013
• 0 replies
• Can anyone hrlp i have had PML for 5 years ...

sneddon's syndrome

• By betsy45 · New reply May 13, 2013
• 107 replies
• i just found out i have sneddon's and i have no clue what to do ...

contact schmid chondroplasia

• By ann69 · Posted May 10, 2013
• 0 replies
• Nu daughter is 15. She had a rare growing disorder, schmid chondroplasia. We live in the Netherlands and we don't know anybody with the condition. I would love to find people with the same condition to ...

Creating a Genetics Education and Consumer Network

• By sromesgene · Posted May 8, 2013
• 0 replies
• The National Genetics Education and Consumer Network (NGECN) is an initiative led by Genetic Alliance to create a network of partnerships and accessible tools with the goal of improving consumers’ access ...

Gerstmann Straussler Scheinker

• By shasha_kitty · New reply May 7, 2013
• 3 replies
• Hi there, Does anyone know anything about Gerstmann Straussler Scheinker disease ? I have lost my Grandfather, Mother, Aunt to this horrible disease. I would like to know if there are any studies going ...

looking to reconnect with others who have HIDS

• By SharonBarbosa · Posted April 30, 2013
• 0 replies
• It has been a while since I have been on this site but realized it is the only place to connect with anybody who has a clue what I am dealing with. I have had HIDS since birth and although my symptoms ...

National Genetics Education and Consumer Network (NGECN)

• By sromesgene · Posted April 24, 2013
• 0 replies
• Hello! Genetic Alliance is leading the effort to create a National Genetics Education and Consumer Network (NGECN). The goal of NGECN is to produce and sustain a collaborative network of partnerships ...

Hemangiopericytoma WHOgrade3

• By Kathylynn · New reply April 22, 2013
• 6 replies
• My husband has hemangiopericytoma WHOgrade3 ~~looking for others with the same diagnosis .his first brain tumor was in1995~recurrence in 2002,regrew in different area of the brain in 2012 and has metastasized ...

My daughter has CMTC

• By Brit1126 · New reply April 18, 2013
• 3 replies
• hello, I'm new to this, and was just wanting to reach out to see if anyone else out there has expirienced this disease for themselve or has a loved one who has. My daughter was diagnosed with a rare skin ...

MAKENZIE K FOUNDATION

• By MakenzieKFoundation (Inactive) · Posted April 12, 2013
• 0 replies
• Last year, Makenzie went into violent seizures for about 45 minutes and was rushed to Kosair Children's Hospital. After days of tests and observations, she was diagnosed with Juvenile MLD. As she began ...

hemangiopericytoma

• By alvarez · New reply April 11, 2013
• 2 replies
• Hello I have scoured the web for hemangiopericytoma support groups. I was unsuccessful. Does anyone have experience dealing with a spinal hemangiopericytoma ...

Need a Masto tip--re: airline travel

• By olearym · New reply April 5, 2013
• 11 replies
• Does anyone have any tips on flying with Masto? I've flown a few times with it now. Sometimes I don't have any flares, some times small ones, and last time when I had to fly halfway across the country ...

Teeth chattering with a Masto Flare??

• By olearym · New reply March 31, 2013
• 17 replies
• Sometimes when I'm in the midst of a flare my teeth will start chattering uncontrollably. Sometimes I will also shiver, most of the time not. I'm not at all cold. It seems to be just under the surface ...

CRAMP FASICULATION SYNDROME - how many of you have SEVERE PAIN and CRAMPS?

• By shannonollis · New reply March 31, 2013
• 55 replies
• Please help me, someone. My name is Shannon Ollis. I'm a 36yr old woman who was diagnosed with Cramp Fasciculation Syndrome a few years ago. The problem is...I AM GETTING SO FRUSTRATED THAT I'M LOSING ...

Genetic Alliance Weekly Tip #2 - One-Stop Shopping for All Diseases

• By GA_Alyson · New reply March 27, 2013
• 1 reply
• When you are looking for the clinical description of a particular condition, where do you go? What about clinical trials information? Or, in this day and age, relevant apps? Before, if you wanted all ...

Missing the Glutathione Gene and the MTHFR gene in the liver

• By hooked1 · New reply March 25, 2013
• 1 reply
• Has anyone on this sight have genetic deficiencies in their liver like mentioned about that cause the liver to scar prematurely! Thank you for your help ...

dealing with sneddons

• By jollytayt · New reply March 23, 2013
• 2 replies
• I was diagnosed 2 years ago. Ive had a slew of issues with it, from severe memory loss to the inability to walk. Worst for me is the feeling of being alone. This disease is hard for others to understand ...

Dx w/ primary biliary cirrhosis

• By gaga25grandkids · New reply March 20, 2013
• 1 reply
• I'm wondering if there is anyone on this board that has primary biliary cirrhosis? Is there a support group for PBC? I live in a rural community and there seems to be no one with this ...

encephalomylitis...my husband

• By jensben · New reply March 19, 2013
• 1 reply
• Hi, my 30 yr old husband has been dx'd with encephalimylitis. The neuro doc days it should be better in 3-6 months, however it started a year ago with double vsion, then insomia, then anxiety and panic ...

mastocytosis

• By KTH · New reply March 17, 2013
• 12 replies
• Having just been diagnosed with mastocytosis and. Being told there's no cure, I'm feeling somewhat overwhelmed, and no amount of questions will get my doctor to provide me with a prognosis. Would be happy ...

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