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Lisa Goble commented on Linda Burke's blog post 'aHUS Family Conference - A Brief Message'

Looking forward to seeing all the info that's become avail since Lydia was diagnosed! Thx for making it avail to those of us who were not able to attend....we so appreciate it.

Oct 12, 2011

Newbie and Lisa Goble are now friends Apr 16, 2011

Lisa Goble replied to Newbie's discussion 'Anyone ever experience aHUS and not have it reoccur?'

Hey! Friend requested ya....my daughter presented aHUS in June of 08' (she was 8 and up to this point very healthy) and achieved remission thru PD (doing 24 hr periods, 3 days, every 4 hrs), plasma pheresis, transfusions of platelets and RBC in…

Apr 16, 2011

Lisa Goble commented on Lisa Goble's blog post 'Broken bones and aHUS'

So....the update on the foot is....STILL BROKEN!:(. Crazy, I know, but I was thinking we could just be done early....(since we're "over-achievers" and all)....but, nope. We re-X-ray on feb 17 (that will be SIX weeks). We have a few…

Feb 2, 2011

Lisa Goble and Jonathan Aguallo are now friends Feb 2, 2011

Linda Burke left a comment for Lisa Goble

How's Lyd making out? Hope things are more settled for you now and that happier news has come your way these last several days. Sending prayers and a hug, Linda

Jan 23, 2011

Cheryl Biermann commented on Lisa Goble's blog post 'Broken bones and aHUS'

Lisa, Any updates on Lyssa's foot?

Jan 13, 2011

Cheryl Biermann commented on Lisa Goble's blog post 'Broken bones and aHUS'

Oh, Alyssa...she sounds like me when I was that age, a first baseman with a passion for the game! Here's the little I know on this subject. You should have her doctors consult the surgeons, they should have a plan in place…

Jan 10, 2011

Linda Burke commented on Lisa Goble's blog post 'Broken bones and aHUS'

Lyd's strong spirit and her family's love will work wonders....so sorry to hear your vibrant daughter has to deal with this. One of the toughest things is probably having Lyd feel that she's let down her softball…

Jan 9, 2011

Broken bones and aHUS

So...here's the latest....Lydia has broken her fifth metatarsal bone in her foot. Of course, as an over-achiever;)' it's snapped all the way thru a little near the base of the bone about mid-way down the side of her foot. And here's the newest thing I learned about this disease....people with renal issues usually tend to heal slower than people without. Great. Fabulous. Something else to "wait and see" on. There seems to be a diff in opinion whether or not to cast or operate with some screws.…See More

Blog post by Lisa Goble Jan 7, 2011

4 Comments

Lisa Goble updated their profile photo Oct 29, 2010

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Photos posted by Lisa Goble Oct 29, 2010

Lisa Goble and Sharon Madrid are now friends Oct 5, 2010

Lisa Goble and Wendy Flinn are now friends May 19, 2010

Elizabeth Farrell left a comment for Lisa Goble

Hey Lisa Thanks for getting in touch.The more I read and hear from people the more I realise how many tough children there are in the world and how many frustrated parents! So glad to hear Lydia is well and sincerely hope she remains so. Liz

May 12, 2010

feeling the weight of an aHUS diagnosis today..thankful for Lyd's continued health (#'s in june!) and praying for the families feeling lost.

Status posted by Lisa Goble May 11, 2010

Profile Information

Birthday: February 25

Do you have a friend or family member diagnosed with aHUS?: Yes

Are you medical personnel or an aHUS researcher with an interest in aHUS issues?: Yes

My child ( or myself as a patient) is best described as:: Tested but Results are Inconclusive

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Lisa Goble's Blog

Broken bones and aHUS

Posted on January 7, 2011 at 5:25am — 4 Comments

Lydia's First Blood Drive

So, my beautiful child was watching Oprah one day and saw a show about "giving back" to your community and decided after what she has been thru, She would like to donate blood. She realizes she would not be alive today if people wouldnt have taken time out of their busy lives to do this simple yet life saving act. (Lydia is 10 yrs old)

Obviously this cant fly...but what could is the idea of doing something great with your life/time. We contacted the Red Cross and together decided a… Continue

Posted on December 25, 2009 at 7:27pm — 2 Comments

Lydia's latest numbers.....can you see me smiling?:)

heres the results from October 5, 2009....Hgb:13.1, Hct:39.1, Plat:276, C3:108, Haptiglobin:86, LDH:211, Creatinine:0.7, BUN/CREAT RATIO:26. Thats the goods. Thankyou so very much for praying for her, I believe it makes a difference. We are all a little relieved and Dr. T is smiling as well. Unless we have an issue, our next test date is beginning of December. I am praying for a cure in our kids lifetime.

Posted on October 7, 2009 at 6:55pm — 3 Comments

my daughter Lydia

Lyd was diagnosed with aHUS in July of 2008. She was a normal (well, sports-minded CRAZY dangerous) kid till one day and then wham, we began our nightmare. She was adopted at birth and partial medical background did not prepare us for this journey. Actually, now after living this life, i wonder how anyone can prepare for watching their babies and beloved kids be the strong ones and go the biggest battles of their lives. Her journey (our nightmare) can be read at… Continue

Posted on October 3, 2009 at 5:34pm — 2 Comments

Comment Wall (5 comments)

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At 10:48pm on January 22, 2011, Linda Burke said…: How's Lyd making out? Hope things are more settled for you now and that happier news has come your way these last several days. Sending prayers and a hug, Linda

At 9:02am on May 12, 2010, Elizabeth Farrell said…: Hey Lisa
Thanks for getting in touch.The more I read and hear from people the more I realise how many tough children there are in the world and how many frustrated parents! So glad to hear Lydia is well and sincerely hope she remains so.
Liz

At 2:03pm on February 15, 2010, Kortnee Fornetti said…: Hi Lisa! I am from the Upper Peninsula of Michigan and my son, Kaleb, who will be 3 in April, was just diagnosed with aHUS in January and spent 3 weeks at the Childrens Hospital of Wisconsin. I read some of your blogs and it surprised me how much we have in common! My husband and I are both adopted and don't know much about our own medical histories so this was definitely a surprise considering we have both been extremely healthy individuals. I am also a hairdresser too :) It is definitely a blessing to have this website to connect to others going through some of the same situations. Thank you for sharing your story! :)

At 9:33am on November 8, 2009, Linda Burke said…: Thanks for the inspirational words!

At 4:51pm on October 23, 2009, Cheryl Biermann said…: Hi Lisa, well we're back from the hospital and I'm on my own computer, I was hoping for Bill to help with this as his memory for the stuff is amazing, mine, hmm. We already had a blood drive at our church run by the Knight of Columbus, when the found out Nathan needed blood, they asked to hold special drives for him. We said, YES. The Red Cross was great, they told us to do a regular drive but get interested parties who would want to be dedicated donors for Nathan. This means they screen the applicants carefully, and test the blood. These donors blood gets tagged to use only for Nathan. The rest, different blood types, ect. go into the regular circulation. This is a win win for both parties, the blood drives tend to do better because they are giving for someone in their own community and you get limited exposure to risks as well as limit the antibodies your body makes in case you ever get a transplant. Even when Nathan wasn't using as much blood, it wasn't wasted, the blood bank at our hospital would come to us and say, Nathan isn't going to use all of that and it's ready to expire, can we use it for others? YES Of course! Anyway, I know Lydia is healthy now, but you might want to line something like this up since you are considering doing a drive anyway. Thank you for giving back!

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The Foundation for Children with Atypical HUS encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.

NEW DIAGNOSIS OF aHUS?
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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.

• • • • • • • • • • • •

It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.

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