Running
Update:
4/26/2015
|
9.1
mi
|
1:26:04
|
4/29/2015
|
7.0
mi
|
1:04:59
|
5/1/2015
|
5.0
mi
|
45:08
|
5/3/2015
|
10.7
mi
|
1:43:44
|
5/5/2015
|
5.0
mi
|
46:28
|
5/6/2015
|
3.3
mi
|
28:07
|
5/8/2015
|
5.0
mi
|
46:11
|
5/10/2015
|
12.5
mi
|
2:01:44
|
5/12/2015
|
5.0
mi
|
46:00
|
5/17/2015
|
6.4
mi
|
1:01:25
|
5/22/2015
|
5.0
mi
|
46:22
|
5/24/2015
|
9.0
mi
|
1:27:06
|
Phew!
Haven’t updated in a while, I guess.
Tapering now before the OutRUN Half Marathon next weekend, though I
confess I haven’t strictly adhered to my training plan the past few weeks. It should be a fun race, nevertheless.
Jane
Update:
Had wonderful news from Jane’s ear doctor
earlier this month. We hadn't seen him in about a
year--since we had started AZD6244. The doctor said he could notice an
improvement in her ears: Last year he could only see a sliver of Jane's ear
drum on the right; this year he said the canal is normal caliber!! He also
could no longer see the tumor bulge on her palate!! Hooray! We return to NIH for Jane’s next MRI scan in
about two weeks—hoping for just as good news then.
Speaking
of MRIs, Jane made a Lego mock-up of the radiology suite of a hospital for her
Career Day at school (she's a doctor). I
like the brain image on the MRI screen and the abdominal ultrasound probe!
A sign Jane knows a little too much about MRIs: The morning when she brought the
diorama into school she looked at it ruefully and said, "I shouldn't have
put glasses on the guy in the MRI. They're magnetic."
NF Update:
May is NF Awareness month! To that end, I am reproducing my daily NF
facts into one table for easy reference :)
·
Neurofibromatosis encompasses a set of distinct
genetic disorders that causes tumors to grow along various types of nerves.
·
NF can also affect the development of non-nervous
tissues such as bones and skin. Neurofibromatosis causes tumors to grow
anywhere on or in the body.
·
Each child of an affected parent has
a 50% chance of inheriting the gene and developing NF. The type of NF inherited
by the child is always the same as that of the affected parent, although the
severity of the manifestations may differ from person to person within a
family.
·
There are three forms of
neurofibromatosis: NF1, NF2, and
schwannomatosis, each cause tumors to grow on nerve endings in or on the body.
·
1 in 3000 people is affected by
Neurofibromatosis type 1, 1 in 25,000 is affected by NF type 2, and about 1 in
40,000 is affected by schwannomatosis.
·
The severity and physical signs of
NF1 can vary widely from patient to patient. People who have NF1 may have
very few neurofibromas (tumors) or they may have thousands of them throughout
their body.
·
NF1 and NF2 are called autosomal dominant genetic
disorders. Half of all cases are inherited from a parent who has NF1 or NF2;
half of all cases are not inherited but the result of a new or spontaneous
mutation.
·
Although most cases of NF1 are mild
to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities;
dermal, brain, and spinal tumors; loss of limbs; malignancies; and learning
disabilities.
·
NF1 also has a connection to
developmental problems, especially learning disabilities, which are five times
more common in the NF1 population than in the general population.
·
NF1 can result in disfigurement in a number of
ways. Skin neurofibromas may develop on the face or on exposed areas of the
arms or legs. The larger and deeper plexiform neurofibromas may grow around the
eye or eyelid, or affect growth of one side of the face. Scoliosis, or curvature
of the spine, can affect appearance when it is severe. Rarely, an overgrowth of
skin or bone causes enlargement of an arm or leg.
·
Some people with NF suffer from a
bony defect called tibial dysplasia, in which the leg bones are curved.
·
Another complication of NF is
pseudarthrosis, in which a bone breaks, typically a long bone such as the
femur, and does not fully heal, causing a "false joint".
·
People with NF are at increased risk
of high blood pressure and renal artery stenosis.
·
NF can also affect the cardiovascular
system causing congenital heart defects. The most common heart defects seen in
NF are those affecting the heart valves, particularly the pulmonary valve.
·
Café-au-lait spots, the most common sign of NF,
are the flat, pigmented spots on the skin, which are called by the French term
for coffee (café) with milk (lait) because of their light tan color. In
darker-skinned people, café-au-lait spots appear darker in color than
surrounding skin. People with NF almost always have six or more café-au-lait
spots.
·
May 17 is NF1 Awareness Day.
·
5% of NF1 patients have a
bone-related issue called sphenoid wing dysplasia, in which the skull and eye
orbit bony areas erode away, causing possible craniofacial abnormalities, loss
of the eye, and enlargement of the eye orbit cavity.
·
About 10% of people with NF will
develop scoliosis, or a lateral curvature of the spine. In most cases it is
mild, but more severe cases may require surgery.
·
Approximately 15% of patients with NF
will develop an optic glioma with the peak age of onset between ages 3-4 years
old. An optic glioma is a tumor of the optic nerve in the brain which controls
the vision
·
Many people with NF1 suffer from
frequent headaches, particularly migraine headaches.
·
May 22 is NF2 Awareness Day.
·
The distinguishing feature of NF2 is tumors that
grow on the eighth cranial nerve in both ears, commonly causing deafness and
severe balance problems.
·
NF2 brings on increased risk of other types of
nervous system tumors as well.
·
NF2 can also cause severe vision problems,
including cataracts, retinal abnormalities and orbital tumors.
·
NF is not the "Elephant Man's
Disease," although it was at one time believed to be. Scientists now
believe that Joseph Merrick, the so-called "Elephant Man," had
Proteus Syndrome, an entirely different disorder.
·
The tumors in NF are usually
noncancerous (benign), but in some cases these tumors become cancerous
(malignant) tumors.
·
NF related malignancy is estimated to
occur in 7-12% of affected individuals. People with NF are at increased risk
for MPNST (malignant peripheral nerve sheath tumor), brain tumors, and
leukemia, as well as several other forms of cancer.
·
NF can cause persistent itching of
the skin.
·
NF is worldwide in distribution,
affects both sexes equally and has no particular racial, geographic or ethnic distribution.
Therefore, NF can appear in any family.
·
The Neurofibromatoses are
genetically-determined disorders which affect more than 2 million people
worldwide; this makes NF more prevalent than cystic fibrosis, Duchenne muscular
dystrophy, and Huntington's Disease combined.
